Who’ll teach Zach?

Zach Kaye is an energetic 5-year-old who loves Elmo, dancing to kids’ songs and guzzling juice from his sippy cup.

His favorite word is “hi,” which he shouts with a big smile to nearly every new face.

In recent weeks, Zach’s parents, Jim and Megan Kaye of Monroe, cheered their little boy for taking his first steps.

Zach has Down syndrome.

In Zach’s case, the congenital condition means he can’t do a lot of things that most other 5-year-olds can, such as walk without assistance or go to the bathroom on his own.

In recent months, several faith-based and other private preschools have turned Zach away because of such delays, something his mother finds hypocritical.

Private schools say they have the heart but not the expertise – nor the cash flow – to help.

Megan Kaye said finding a private school for Zach started as a quest for convenience – to have him closer to her and her husband’s sales jobs at a Woodinville printing company.

Now, it’s her crusade.

“They don’t even try,” she said. “They’re deciding his potential before he even has a chance.”

There are rare instances in the county where families have enrolled their children with Down syndrome in private schools.

Still, the placements were short-lived and offered the same lesson: It’s up to a parent to make it happen.

Kaye is determined.

The family, which also includes son Nicholas, 8, attend Cascade Community Church in Monroe. Their faith has helped them raise Zach, she said.

“The Christian community should be leading the way,” Kaye said. “They should be showing how students can be included in the classroom and how great it can be.”

Schools cite costs

School administrators have turned the Kayes down at three Christian schools and four Montessori schools in Bothell, Bellevue, Maltby, Monroe and Woodinville – “without even looking at him,” she said.

The owner of another private preschool in Woodinville enrolled Zach, but changed her mind after the first day. The preschool’s owner declined comment, citing confidentiality rules.

Zach currently attends a public school, Maltby Elementary, for a developmental preschool program four mornings a week.

Private school leaders say it would be difficult to match what public schools offer for children such as Zach, specialized education that requires training equipment and salaries for aides to give one-on-one attention.

“The costs of special education services are kind of prohibitive for private schools,” said Judy Jennings, executive director for the Washington Federation of Independent Schools. “I think most parents understand that.”

How much the education costs depends on the disability.

Within public schools, the costs in 1999-2000 ranged from $10,558 for a child with a learning disability to $20,095 for a student with multiple disabilities, according to the most recent study by the Center for Special Education Finance in Palo Alto, Calif.

For comparison, the average cost to educate a child in regular public education was $6,556.

A child with Down syndrome would fall into the broader category of students with mental retardation, where the average public education cost is $15,040 per student.

Public schools receive state and federal dollars earmarked for special education to make up most of the added costs.

Private schools rely mainly on tuition for all of their programs.

In Washington, private elementary school tuition averaged $5,396 per year in a 2005 survey by the Washington Federation of Independent Schools.

Several of the schools that turned the Kayes down cited finances. Other schools said Zach needed to be toilet trained.

Kaye calls them excuses.

“Do you think that I thought I had the resources?” she said. “I’m a working mom, and I have a child born to me that won’t be able to walk or be potty trained for years and needs all kinds of expensive treatment.

“If Jesus were truly standing here right now, would he send Zach somewhere else?”

Montessori response

The family is most disheartened by the response from Christian schools. But Kaye said she was surprised to find similar reactions from Montessori schools.

Those schools are built on a philosophy set by Dr. Maria Montessori, an Italian physician who 100 years ago started her educational style with children deemed mentally deficient.

Schools that follow the philosophy in Snohomish County have students with learning disabilities as well as some with autism, Asperger’s syndrome, attention-deficit hyperactivity disorder and sensory integration issues.

But like parochial schools, students enrolled locally tend to be higher functioning.

Monroe Montessori School in the past had two students with autism attend classes with financial help from the local public school district.

That’s rare, however, and took some fighting by parents in meetings with public school staff over the children’s Individual Education Plans, legal documents that specify what kind of education they deserve under federal law.

More often, private schools suggest families turn to public schools.

Monroe Montessori School Administrator Allan Washburn said he knows that’s not the response many parents desire.

“Often times, when you’re trying to talk to a parent about their child, you’re breaking their dream,” he said.

An open door, to a point

Beyond expertise and finances, a school’s self-image also plays into how much it will accommodate a child with special needs.

“Every school has a certain vision and mission. (If) you end up pouring a lot of resources and extra staff in, and your program has a tendency to change,” said Ryan Evans, principal of Providence Classical Christian School in Lynnwood. “We don’t want our program to change.”

Providence next fall plans to allow students with more involved special needs into its regular classrooms, but only if the parent stays with the child.

It’s modeled on a similar set-up the school had informally several years ago with the nonverbal son of a part-time teacher at the school, Evans said.

“It was more ‘Feel free to be here, be part of our community.’ But it’s going to take a lot of work on the part of the family, because we’re not going to have the teacher do anything different than they would for another student,” he said.

Cedar Park Christian School, which has campuses in Bothell and Everett, also seeks to work with students within the regular classroom setting.

The school system’s Bothell preschool was one of the places Kaye said she was turned away.

Superintendent Clint Behrends studied mental retardation as part of his master’s degree and taught for 10 years in the public school system.

“I believe … whenever possible we need to help those children, and they can be helped,” he said.

But it’s important for teachers as well as parents to be onboard about a child’s special education and how it will work out in a regular classroom, he added.

“If there’s not a match, then we’re not forced to make it a match,” Behrends said, adding he did not know about the Kayes’ situation.

Success stories

Brian Gouge is now 16 and a freshman at Edmonds-Woodway High School.

But when he drives by Holy Rosary Catholic School in Edmonds with his family, he still calls it his school.

Brian, who has Down syndrome, attended Holy Rosary part-time from kindergarten through third grade.

It’s one of the few examples of a county private school taking in a student with Down syndrome.

Remembering those years brings tears of joy to the eyes of his mother, Jean Sittauer-Gouge.

“You remember all the really wonderful things people have done to help us,” she said.

But getting Brian into the school took some pushing as well as partnering, she said. “I didn’t really give them a chance to say ‘no.’”

The first year, Sittauer-Gouge and other parents of kindergartners took turns giving Brian one-on-one attention within the regular classroom.

The second year, the pastor decided to hire an aide, with the church and Gouges sharing the salary costs.

Brian attended Holy Rosary in the mornings, finishing his days at a public school, Seaview Heights Elementary, for physical and occupational therapy.

Eventually, the back-and-forth got to be cumbersome.

And the older Brian got, the less he benefited from the regular instruction at Holy Rosary.

So in fourth grade, the Gouges enrolled him in a public school full time, where there are special classes designed for students like Brian.

“The Catholic school accommodated him as best they could. They don’t have a lot of guidelines for it. We made things up as we went along,” Sittauer-Gouge said. “I think it worked really well.”

The time Seth Perera, 8, spent at a private Montessori school also was brief. But that was largely because the school – which his mother owns – only goes to kindergarten.

Small World Montessori enrolls 55 preschoolers and kindergartners at two campuses in Snohomish and Everett.

Seth was “the inspiration for a lot of what we do,” said Shelly Perera, his mother.

The school developed a toddler program around Seth so he could be around other kids his age. He stayed at the school through kindergarten, then was home-schooled and now is in a public school.

Along the way, two other children with Down syndrome enrolled. In each case, the parents worked one on one with their children in the classroom.

Perera now hopes to expand Small World to include elementary grades. She wants to add a one-on-one program that would work with students in small groups. Seth is again the inspiration.

“That’s what we’re looking at: How can we accommodate kids like this?” Perera said.

Perera said she remembers what it was like looking for a school to take her son.

“There’s nothing for our children out there. And it makes me upset,” she said.

Mom on a mission

Back in Monroe, the message for the Kayes may be the same: Don’t underestimate a mom on a mission.

Kaye said she’s a dogged person and prepared to do what it takes to make space available in more private schools for children such as Zach.

She dreams of securing a major grant to start a school of her own in the Woodinville area.

For now, she’s talking to her pastor, friends and anyone else who will listen – and is still knocking on doors.

“My hope would be that the story would shake people up to make some changes,” Kaye said. “I think that’s why God gave me Zach.”

More about Down Syndrome

• Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters development.
• Down syndrome is the most commonly occurring chromosomal abnormality. About one in every 733 babies is born with Down syndrome.
• There are more than 350,000 people living with Down syndrome in the United States.
• A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes and a single deep crease across the center of the palm.
• All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate.
• People with Down syndrome are at increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions. Many of these conditions are treatable.
• Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 56 today.
• The incidence of births of children with Down syndrome increases with the age of the mother. But because of higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.

Source: National Down Syndrome Society

Reporter Melissa Slager: 425-339-3465 or mslager@heraldnet.com.