Sioux Falls are helping families with visually impaired children

Like many parents, Erin and Jeff Hortsmeyer spend most of their time caring for their son, Samuel.Except for this Sioux Falls couple, their 6 1/2-year-old requires one-on-one, around-the-clock attention. His care is getting more intense the older he gets.But access to the latest information regarding his health issues just got a little easier.

A new Web site, launched this week, features the Hortsmeyers and several other families that are raising children with visual impairments. It is a project the American Foundation for the Blind hopes will link families together, giving them support.The couple felt compelled to be a part of Website and are shown through a video about their family.

With connections and support, families may feel more empowered to help their children reach their full potential, says Carl Augusto, president and CEO of the organization from his office in New York.Augusto, who's blind himself, says, "There was nothing like this when I was born. My parents had no hope. People had the lowest expectations for blind people. They didn't know where to turn."The Website puts people in touch with each other, but more than that it offers hope.

Hope is a good thing for the Hortsmeyers. They live a challenging life with Samuel.While he goes to kindergarten at John Harris Elementary, is fond of books and loves being read to, any similarity to a normal family ends there. His health issues are overwhelming and the challenge is growing as Samuel gets bigger. He is blind, non-verbal and has a seizure disorder, says Erin Hortsmeyer, his mom.

"He takes meds 12 times a day. We spend a lot of our day feeding him. He'll eat, then take a bath. We do a lot of reading. It's one on one at all times."The American Foundation for the Blind Website (afb.org) has provided an outlet "to share information and support as families, to raise children that are blind and vision impaired," she says.The couple found out Samuel was going to have problems when Erin was 28 weeks pregnant. "His head was four weeks behind in development. The doctor said he had a five percent chance of survival at birth."

It was a terrible irony—Erin had had two previous miscarriages. "I spent the first part of the pregnancy fearful of losing it. Then to find out...we felt disbelief and were scared. But we never thought of terminating."Despite Samuel's extensive health problems, learning of his blindness was another blow.

"We had concerns about his vision very early on. He didn't respond to light, didn't track things. We found out he was blind when he was four months old."Overcoming the isolation was a monumental task. "We felt like an island. We wanted to connect with people whose kids had the same things."That's where the Website comes in.

There are 93,600 school age kids who are visually impaired in the United States. "Many of the families (that have blind kids) in South Dakota have never met a child similar to their own," says Marje Kaiser, superintendent of the South Dakota School for the Blind and Visually Impaired in Aberdeen."It's painful to watch your child not meet milestones. It's an ongoing grieving process. You cannot understand what a family goes through trying to raise a disabled child," Hortsmeyer says.
The Website empowers parents through tips such as giving recommendations on how to build a good foundation to help your child with school readiness to simply sharing experiences, Kaiser says."By just being able to talk to other parents, it becomes a powerful tool."The Website can be accessed by age group or disability and includes resources available in states and communities. "The site is rich. There's so much information, videos and tips," Kaiser says.

Besides the parent connect, there's another site geared to seniors who are blind or are losing their eyesight. It includes information on how to set up a kitchen, for example."The Website is a wonderful portal to get you to where you want to be," Kaiser says.

"The beauty of the Website is the community we're creating. They're going to find a parent of a similarly disabled child," Augusto says.The Website was established with help from the National Association for Parents of Children with Visual Impairments (NAPVI), the Hilton foundation, Annie E. Casey Foundation and the Lavelle Fund for the blind, Augusto says.It's one day at a time for the Hortsmeyers but the Website helps.

"Sam was given to us for a reason. God gave me the ability to speak out on his behalf. It's a way to reach out about Sam and share some of the emotions and concerns we have about him," Hortsmeyer says.

Reach Dorene Weinstein at 331-2315