Fairfax family fights for epileptic son to bring service dog to school

By Bill Turque
Washington Post Staff Writer
Thursday, December 30, 2010; 10:43 PM

Andrew Stevens is a sweet-natured 12-year-old boy who loves Dragonball Z, Hannah Montana and singing along with the Wii version of "American Idol." But the center of his life for the past month has been a German shepherd named Alaya, who Andrew's parents say is trained to detect and respond to the seizures he experiences as many as 20 times a day.

"She's a good dog," said Andrew, the son of an Army sergeant at Fort Belvoir, who has a severe form of epilepsy known as Lennox-Gastaut syndrome. Alaya carries a magnet in her collar that she can swipe over a surgically implanted vagal nerve stimulator in Andrew's chest. The device sends an electrical impulse to the brain that can ease the severity of seizures.

Angelo and Nancy Stevens assumed that Fairfax County school officials would follow federal and state laws and allow Alaya to accompany Andrew to his sixth-grade classes at Fort Belvoir Elementary School - a role service dogs perform for many disabled children across the country.

But Fairfax officials assert that the staff members in Andrew's special education classroom are able to do everything Alaya can to respond to emergencies and ensure the boy's safety. They also say that the dog needs a handler under state guidelines and that Andrew, who functions on a kindergarten level academically, has not been certified for that role.

"That's a serious question," said Paul Regnier, spokesman for Fairfax County Public Schools. He said there is ample precedent for the county accommodating service dogs in schools, but only when certification is in order.

The Stevenses and Alaya's trainer say the boy and the dog have all the certification they need, just not from the nonprofit organization that the state recognizes in its guidelines, Assistance Dogs International. They also say the school system is wrong about being able to respond in the same way as the dog.

Jon Sabin, who runs Seizure Alert Dogs for Life, a New York firm that is not affiliated with ADI because it is a for-profit entity, said Alaya, who is never more than a few feet from Andrew, reacts in five to six seconds when he is having a seizure, compared with 30 to 45 seconds for a teacher at the front of a classroom.

Sabin and the Stevenses say those seconds could save Andrew's life.

"I think what the school is doing is heartless," said Sabin, adding that the safety of other children around the dog is not an issue because it is focused on the person it is serving. "These dogs are on cruise control," he said. "When Andrew sits, she sits. When Andrew gets up, she gets up."

The research on what seizure dogs can do is mixed. The Stevenses say that Alaya is the rare dog who not only responds to a seizure but actually senses it - possibly through a heightened capacity to smell - several seconds beforehand. They also say Alaya has been trained to snatch a specially programmed cellphone from Andrew's waist that calls 911 when the dog bites down on it.

Service dogs have been the subject of similar disputes in other cities. But Richard Nyankori, the District's deputy chancellor for special education, said that just like wheelchairs, canes and voice-enhancement devices, such dogs are "critical assistive supports for students and staff with disabilities."

It has been a bitter experience for the Steveneses, who have faced multiple challenges. Angelo Stevens was removed from an abusive home as a child in Rhode Island and grew up as a ward of the state. Nancy Stevens has an autistic brother who lives with the family. They also have a daughter with a seizure disorder.

When Andrew's doctor at Walter Reed Army Medical Center prescribed a service dog, the couple had to stretch the family's already frayed finances - and solicit contributions - to cover the $18,000 cost.

It's also not clear how much time Andrew has left. The Stevenses said doctors have told them that he might not live beyond his teenage years.

"We don't know how long we've got with him," Nancy Stevens said.

But the couple, who will meet with county officials next week, said they are determined not only to see that Andrew gets to take his dog to school, but that other kids in similar straits can be served, as well. They've started a fund in Andrew's name to help raise money for other epileptic children in need of service dogs.

In the meantime, Andrew and Alaya are clearly bonding, with hours on the floor together as Andrew plays video games.

"I love" Alaya, Andrew said.

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