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Parents in trenches of autism services

By Peggy Peck
MedPage Today Senior Editor

Editor's note: CNN.com has a business partnership with MedPageToday.com, which provides custom health content.

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Rick Klinenberg says he knows his son David will never be normal but at least he has a chance.

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GARFIELD, New Jersey (MedPage Today) -- The first hint for Ellen and Rick Klinenberg that their lives would not be as they had planned came in March 2001 when a pediatrician raised some questions about the development of their 18-month-old son, David.

Those questions triggered months of anxious watching and waiting for David to "bloom." David didn't talk, didn't attempt to communicate by pointing, and didn't even seem to know his name.

By August, the waiting was over and the Klinenbergs found themselves facing a developmental pediatrician, expecting a diagnosis and a plan.

"We were told to sit down, take a deep breath, and then the doctor told us that David had a pervasive development disorder on the autism spectrum," Rick Klinenberg said.

The word that the Klinenbergs heard was "autism."

"We were told to call New Jersey Early Intervention Services and we should call the New Jersey Center for Outreach and Services for the Autism Community (COSAC)," Rick Klinenberg said. "But I asked again -- actually I asked five times - 'what if we don't want to go the state route.' "

He got no answer.

"We had a diagnosis," Klinenberg said. "I wanted a plan."

There was no plan.

"No one has a plan," he said. "Parents have to do the research and learn how to deal with this."

So they left the doctor's office and found themselves, 11 years after they met as graduate students in an MBA program at Columbia University and eight years after they married, and embarked on a life they never imagined.

Before that August day, Rick, who works in product development and marketing, and Ellen, who worked in publishing before becoming an at-home mom, lived an idyllic life in an affluent suburb. Their older son, William, was 4 1/2. David would be 2 on September 13.

In the Klinenbergs' new life, Ellen spoke with both the N.J. Early Intervention program and COSAC, and the family headed to California for a vacation that had been planned before the doctor's appointment. Years later both say that vacation served as an adjustment period and a mourning period for the life that David would never have.

Applied behavior analysis

Back in New Jersey, they lined up a second opinion consultation with a developmental pediatrician at Columbia University, had an evaluation with Early Intervention in October, and began attending COSAC meetings "where we learned that parents can really help other parents."

By November, they had a plan: applied behavior analysis, or ABA.

This approach requires a coordinator and a number of therapists to work one-on-one with the child for hours every day. About half the cost of this intensive program was paid for by the state. But the Klinenbergs soon learned what David really needed was a school. Other parents advised he needed it by age 3.

There are a number of excellent schools in New Jersey and they toured several of them, Rick Klinenberg said. But David was admitted to none.

At the same time a small group of parents was starting a school, one that would use the ABA methodology in a classroom environment. Both Klinenbergs had business skills and Rick was an expert at drawing up business plans. They were invited to join the group.

The group, six families actually, sought help from the Alpine Learning Group, an established school in Bergen County. "We did a presentation there and they agreed to offer consultative services to us," Rick Klinenberg said. "They helped us find a director, helped us with our program."

REED Academy

The school, called Resources for Effective Educational Development (REED) Academy, didn't open until September 2003, which was a year after David turned 3. When it opened in rented space at a temple, David was one of four students. There was a teacher for each student.

By the end of the first year, the school had 12 students and 12 teachers, and it had outgrown its first home.

In the fall of 2004, REED Academy moved into a former parochial school. Here there were ample classrooms and a gymnasium where the REED students -- now 18 -- had a chance to work on physical skills to go along with improved communication and behavior skills.

The school continues to grow and plans are for an enrollment of up to 27 students. Moreover, just like other schools for children with autism, REED Academy now has a waiting list. REED Academy will provide educational services through age 21. "Our children will be trained in job skills," Rick Klinenberg said.

The school recently purchased a seven-acre site for a campus that will include adult group homes.

"The site is near a number of factories and businesses where our children could eventually find jobs," Ellen Klinenberg said.

Blossoming at last

For David, who will be 6 next month, the two years at REED have meant major changes.

"He can now follow directions," Ellen Klinenberg said. "I tell him something and he responds. He can play simple board games with his brother. He knows that William is his brother and he can say that."

And sometimes there are breakthrough moments. David is having one this week. The school director has gotten all the kids into inline skating.

"David is really uncoordinated, so I never thought he could do this," Rick Klinenberg said. "But he loves it."

At the same time, Klinenberg is a realist.

"We know that David will never be normal. He won't be mainstreamed," he said. "But he is in a good program, receiving good therapy, and he is picking up good skills. While he will never have a normal life, our hope for him is that he is able to live in a group home and have some kind of a job.

Finally, although his work as a founder and treasurer of REED Academy requires close to full time effort, Rick Klinenberg says it's worth the effort.

"It sure beats sleepless nights worrying about what we are going to do next year because we know that next year and every year until David is 21, he is going to REED Academy."

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