Parents of blind kids find lifeline with new group

Casey Bergquist used to worry that her daughter wouldn't have friends.

"I would see girls chatting at the bus stop and say, 'That's not going to be Emily,'" Bergquist said.

Shortly after she was born in 2008, Bergquist and her husband, Joe, found out that Emily was blind. And even after the initial shock wore off, the uncertainty grew: How would she learn to feed and dress herself? How would she go to school? And how would she make friends?

"We had no clue what to do," Bergquist said.

Then last year, the Bergquists, of Chanhassen, and two other families joined forces to found a Minnesota chapter of the National Association for Parents of Children with Visual Impairments (NAPVI). Quickly, they met others with visually impaired kids. They traded stories, shared advice and found a valuable lifeline from others who understood what they were going through.

Emily had a chance to spend time with other kids who were like her. And her parents' confidence continued to grow.

Now, it feels different to see those girls at the bus stop. "You know what?" Bergquist said last week. "That is going to be Emily."

The group has grown rapidly -- they now have about 25 families -- and they've been planning bigger and bigger events that let families socialize and do something fun. The biggest yet was a snow-tubing outing Saturday at Buck Hill in Burnsville, attended by about 50 people. Before that, it was a "cookies with Santa" event in December and an ice cream social in August.

They're not only chances for parents to connect and build relationships, but chances for the kids to do something "normal" and feel good about themselves -- the kind of things other kids and parents might take for granted.

It's hard to overstate what a relief it can be for parents with special-needs kids to find a support network. And with visual impairment, it's even harder than with many other handicaps, because it's so rare.

"Blindness is such a low-incidence disability, our families are spread out all over, and it's sometimes hard to reach those families," said Lisa Moon of Apple Valley, who with her husband, Tim, was one of Minnesota NAPVI's three charter couples. One of their sons, Ian, is 11 and has low vision.

Ian attends the Minnesota State Academy for the Blind in Faribault, the state's only school for the visually impaired. He's learning Braille and will eventually move to a mainstream school closer to home, Moon said.

Of course, going to a mainstream school is like almost anything when you're blind: It's many times more difficult than it is for the sighted.

Bergquist and Moon both described raising a blind child as a never-ending process of teaching, explaining, re-teaching and re-explaining. When a baby can't see how other people sit up, stand or crawl, she can't imitate them, so the skills need to be taught over and over with constant verbal cues. When a child can't see how his parents or siblings hold a fork, it's that much harder for him to do it himself. Imagine how difficult it gets when it comes to advanced social skills, many of which rely on the ability to interpret body language.

"It takes a lot of energy and patience," Moon said.

That's where a group like NAPVI can help. Between parent meetings, group get-togethers and informal chats over coffee, there are plenty of chances to share ideas. If a parent wonders how to get a child on a regular sleep schedule when he can't tell night from day, parents of an older child can chime in and explain what worked for them. When somebody talks about a movie theater with adaptive technology that provides narration through headphones, others can take their kids.

"I learn the most from families who have been there," Bergquist said.

Moon likes to stress that being involved in Minnesota NAPVI can be as much or as little as families want. If they want to come to all the events and get to know everybody, they can, but if they'd rather keep a distance and just get informational e-mails, that's fine, too.

The group's leaders plan to keep expanding their reach. They're hoping to hold quarterly meetings with guest speakers, and a statewide conference is in the works. They're also pushing hard to get the word out so more families can tap into their growing sense of community.

"Not only do they join our group, but they become our friends," Bergquist said.

South team leader Dylan Belden writes a biweekly column in South Extra. E-mail him at dylan.belden@startribune.com. You can also follow him on Twitter at twitter.com/StribDylan.