Hopeless is not an option - 04/28/2003

Monroe family looking beyond obstacles to care for autistic child.

BY CYNTHIA RAMNARACE

Evening News staff writer

At 3 years old, Noah Crosley is at a crucial point in his learning and development. All children are voracious learners at this age. But for Noah, it's different. He has to be coaxed into learning things that come natural to most children. He has to be taught how to play. Language doesn't come easily to him, and a word he learns one day may not return to his vocabulary for weeks or months.

Noah has autism, and his parents are doing everything in their power to lessen the disorder's grip on their son. This isn't easy. Autism is a cruel condition. It robs children of their ability to connect with the world around them. Noah has no sense of fear. He has trouble communicating, either through words or actions. Noah will sit by himself, fascinated by the weave of a carpet or the cool smoothness of a blade of grass.

Noah's parents, Bob and Sue, revolve their lives around making sure that Noah has the best chance for a normal life. There are a slew of therapies that he needs now: sensory integration, play, music and speech. If he doesn't get them now, when brain development is in high gear, they won't do him much good. For Noah, every day is crucial.

So when an insurance company tells the Crosleys of Monroe that it won't pay for therapy for a disorder with no proven treatment, they don't have time to argue. The Crosleys hand over their credit cards and let the balances grow. His treatments cost about $12,000 a year. They welcome telemarketers and their latest offers of low financing and new lines of credit. They keep stacks of bills with the intention of writing appeals to the insurance company, hoping to get something covered. But three hours a day of mandatory therapy for Noah, and two other sons to care for, and Mr. Crosley working two jobs to cover their expenses n it doesn't leave much time for paperwork.

"After age 6 or so, the window closes," Mr. Crosley says. "We're not going to allow that to happen."

No known cause

There are many theories but no definite answers for what causes autism. The Crosleys believe their son was born with the disorder.

It was Mrs. Crosley's third pregnancy. She thought she'd been blessed with what people call a good baby, one who didn't cry much at all and was content to lie in his crib and play by himself.

There were small signs that something was wrong. When Noah was 3 months old, Mrs. Crosley told the photographer taking his portrait to save himself the hassle of trying to get the baby to smile. Most babies smile by 2 months; Noah waited until he was 10 months.

At 8 months, Noah wasn't sitting up by himself. Give it another month, the pediatrician said. If he weren't sitting up by then, they'd send him for testing. Within a month, he was sitting. When he wasn't responding to sound or noises, a hearing test was done. He was fine. All babies develop at their own rate, the Crosleys were told. Give it time.

At 20 months, Noah still hadn't uttered a word. Just before his second birthday, Mrs. Crosley developed a bad case of bronchitis. After Mr. Crosley left for work and the other kids for school, Mrs. Crosley went back to sleep. At 11 a.m. she awoke in a panic. She had expected a crying Noah to awaken her hours before. She ran to his crib. Noah was lying in his crib, playing.

Something is not right here, Mrs. Crosley thought. How long had her child been just lying there? Why wouldn't he call out for her? She called her sister. They stood over Noah's crib and spoke to him. Noah did not respond. It was as if they weren't even there.

Mrs. Crosley confessed her fears to her older son, Lucas', preschool teacher. She recommended an assessment by the Monroe County Intermediate School District. They diagnosed him with pervasive development disorder, PDD, which shares many of the symptoms of autism.

The hunt was now on to find out what was this meant and how to fix it. The Crosleys took Noah to a pediatric psychiatrist in Ann Arbor.

"You walk in there hoping they'll tell you it's this, and he'll get over it in a year," Mr. Crosley says.

The news they got was devastating. Noah was diagnosed as moderately to severely autistic.

"Now you have to figure out what you are going to do," the doctor told them.

The next steps

The Crosleys got on the Internet. They bought books on autism. There are many different theories on treating autistic children. Each child's symptoms are different, and each child responds to different therapies.

"You are your own doctor," Mrs. Crosley says.

Noah was put in a music therapy class at the ISD. He responded wonderfully. The Crosleys enrolled him in private classes, but they weren't as beneficial. He is also doing well in the ISD preschool, where he is exceeding expectations set for him this year.

In addition, Noah receives sensory therapy at New Found Abilities in Tecumseh. When the Crosleys heard about the PLAY (Play and Language for Autistic Youngsters) project at the University of Michigan Medical Center, they went to a seminar. They left knowing that whatever the cost, Noah had to enroll in this program.

PLAY is intensive early intervention aimed at improving IQ, language and social interaction in children ages 2 to 5, the years when language development is at its most crucial point. The goal is to enable children to function independently in regular classrooms by age 6.

To keep costs low, parents are taught to be the child's primary therapist. Mr. and Mrs. Crosley spend three hours a day playing with Noah.

"The PLAY Project teaches them how to be a human being," Mrs. Crosley says. "It teaches them to interact with others."

All these therapies have worked wonders on Noah. The ISD's goal for him by the end of this school year was for him to be able to sit and perform one activity for three minutes straight. He is now up to 17 minutes. The one-word vocabulary he had at the beginning of the school year (the word "no") has expanded to the point where the Crosleys have lost count. He says "hi daddy," and "sorry mommy" and can ask for things like juice and his favorite Wiggles tape.

"The whole idea is to get him to interact with you," Mr. Crosley said. "You have to teach them that there are other people in the world."

The Crosleys have learned that their son is hyposensitive, which means he needs a lot of stimulation. They used to spend hours trying to get Noah to sit still and calm down. They now know that roughhousing, getting him to jump up and down and swinging him in their arms actually soothes and calms Noah. It also helps him refrain from activities that could be harmful, like banging his head against the wall.

Noah has made fantastic progress. But as the school year winds to a close, the Crosleys had to look at their options. The ISD summer preschool program is only for children who have proven in the past that they regress without constant schooling. The Crosleys don't want to take the chance that Noah would regress without a daily program. So they have enrolled in a six-week program called SAIL (School for Autistically Impaired Learners) in Toledo. Again, they must pay the entire $2,500 tuition.

The Crosleys understand that it is not the state's responsibility to take care of all Noah's needs related to autism. There are state programs that help pay for treatments, but the Crosleys' income is higher than the threshold. Their main gripe is with their health insurance company that doesn't see autism as a treatable medical condition.

"The ISD does a great job," Mrs. Crosley says. "A lot of people fail to realize that it's an educational facility. It's not a medical facility."

So until the Crosleys file their appeal with their health insurance company, and until autism treatment is a covered benefit, they will do what they have to do. Mr. Crosley is working two jobs. Mrs. Crosley had to quit her job so she could devote the time necessary to shuttling Noah from school and therapy and working intensely one-on-one with him each day. The Crosleys also have to deal with the guilt of knowing that one of their three children demands most of their attention. This isn't easy for the other two, Lucas, 5, and Andrew Archambault, 12.

But without the treatments, there is no hope. And being hopeless is not an option.

"We believe he can recover," Mrs. Crosley said. "When you see a child make this much progress n it used to be he didn't speak, he didn't hug you, he didn't kiss you goodnight. Now he does."

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