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Staying connected at a distance

Donna Bigelow works on an assignment with her daughter Mary Kate Monday afternoon. Mary Kate needs help with some work because she doesn't have the strength to lift her arms, but she is able to participate in classroom discussions.

On Monday morning, Mary Kate Bigelow and her third-grade classmates were hard at work unscrambling words. But while Mary Kate could see the other students and hear the chatter of the classroom, she couldn't turn and whisper with a friend. Couldn't ask for help or share a joke.

Mary Kate was miles away from the rest of the students, sitting in front of a small white laptop computer in her Rosemount home.

For the next few months, a webcam and a microphone will be Mary Kate's primary connection to her classmates at Red Pine Elementary School. Diagnosed at 6 months of age with spinal muscular atrophy, a condition that causes a wasting of her muscles, Mary Kate is particularly at risk to illness. That makes cold and flu season is a dangerous time for her to be around large groups of potentially sick kids. So, while friends deal with sniffles and sneezes this winter Mary Kate will stay at home. When the days turns warmer in the spring and the risk of illness fades, she'll head back to school.

For Mary Kate's parents, the split schedule is a compromise that allows their daughter to have as normal a life as possible while still protecting her from the biggest dangers.

Donna and Mark Bigelow decided early on they wouldn't shelter their youngest child from the world. She goes swimming and sledding. And as much as possible, she goes to school. They sent her to school full time in kindergarten, but in first grade Mary Kate got so sick she ended up in the hospital on a ventilator. They were afraid they were going to lose her, and they knew they needed a different solution.

The Bigelows worked with administrators at Red Pine and with the district's special education department to find an answer. What they came up with uses mostly off-the-shelf parts -- two Apple laptops with built in web cameras and microphones -- and a few special items -- a joystick and super-sensitive button that allows Mary Kate to pick out words on an onscreen keyboard.

In as many ways as possible, Mary Kate is part of the classroom. She asks questions and raises her hand when her teacher is looking for an answer. When principal Gary Anger stops by to greet students he makes a point to say hello to the camera. And when students have recess, one or two students volunteer to stay inside and play games with Mary Kate.

It takes some work to pull it all off. Mary Kate's parents have to make sure they get the worksheets and other materials the teacher uses every day. But everybody seems happy with the results.

"It's just so worth it for her," Donna Bigelow said. "She's just as much a part of the classroom as the other kids."

Sometimes it can be surprising to discover just how much a part of the classroom Mary Kate is. Last year, she came home from school and told her mother she needed to write a speech about herself. Donna figured it was a school assignment, but a few weeks later Mary Kate announced that she needed to finish the speech so she could deliver it in front of the rest of the students.

That's when Donna learned Mary Kate was running for student council. She won, and now one of the other student council members brings the school's laptop to student council meetings so Mary Kate can participate.

Mary Kate decided to run for student council because she thought it would be fun, and because it would be another chance to spend time with her friends.

"I had never been on it," she said.

"She's a very confident young lady for her disability," Donna Bigelow said. "She just wants to be one of the kids. She doesn't see any reason she can't be on student council."

Mary Kate is the only student in District 196 that has an arrangement like the one she uses, and there are challenges that come with it. Making things work requires constant adjustments, and the arrangement changes every year. Teachers have to be willing to do things a little bit differently to accommodate her. But everybody seems happy with the way things are working. Mary Kate has friends she wouldn't have if she were home schooled, and the Bigelows have heard from many parents who have said knowing Mary Kate has had a positive impact on their children. Parents tell her it has helped make their children less materialistic and more appreciative of what they have.

Mary Kate lacks the strength to lift her arms, and she's weak enough that even talking can seem like a struggle. But she doesn't see many limitations for herself. She's got two older siblings are in college, and she talks about going herself someday. Both of her siblings went on a mission trip with St. Joseph Church, and Mary Kate wants to go, too. She wants to show cows at the Dakota County Fair.

The mission trip might be a stretch, but Donna and Mark have found a Minnesota boy with SMA who was able to show sheep at his county fair. They're looking into that for Mary Kate.

"We have always told her there's nothing you can't do," Donna said. "We just have to find a different way to do it."