Smith: ‘I’d be devastated if I couldn’t get this therapy’

“She had a seizure this morning, so I don’t know how well she’s going to do today.”

Jenny Fienman frowned apologetically.

Her daughter, 2-year-old Allie, was sprawled on the couch face down, her body rocking and wrapped in a blanket. She clearly would’ve been happy to stay there, but Fienman didn’t let that happen. She couldn’t. Not on therapy day.

Allie is visually impaired, suffering from a disease so rare that it’s known only by the name of the gene mutation that causes it, CDKL5.

She’s also one of only about 140 children statewide to receive regular visits from a therapist specializing in vision services. She is lucky. About 200 to 300 other children don’t.

“With the visual impairment, they learn so much differently,” Fienman said, looking at her daughter. “Just trying to get her motivated to crawl has been very hard because when they can’t see where they’re going, they have no motivation to do anything. I’d be devastated if I couldn’t get this therapy.”

Yet Indiana is one of just 14 states that, by law, doesn’t provide therapy services to babies and toddlers who are blind or visually impaired. Parents must wait until their children are 3 — old enough to enroll in the Indiana School for the Blind and old enough to develop a number of bad habits that could affect their ability to learn for the rest of their lives.

It’s a gap in state policy that, for some reason, has largely gone unnoticed — even with a speaker of the House who is on the board of Bosma Enterprises, a nonprofit that provides employment training and placement for people who are blind or visually impaired.

A group of teachers and parents have banded together to change that.

First, they founded an Indiana chapter of Visually Impaired Preschool Services, or VIPS. The nonprofit, relying on money from individual donors and foundations, provides services to children like Allie. Yet VIPS has only one full-time teacher, who has a caseload of about 50 kids, and a couple of part-time teachers who help out when they can.

VIPS needs to scale up. So its board is asking the Indiana General Assembly for $500,000 a year to hire more teachers to serve more kids.

“It’s really a good deal for taxpayers,” said Annie Hughes, VIPS’s only full-time teacher and former teacher at the School for the Blind. “They would be getting a million-plus dollars worth of services for $500,000 a year.”

That’s the official pitch for fiscally minded lawmakers.

But Hughes, Fienman and others who regularly work with children who are visually impaired know that the budget appropriation is about so much more than money. It’s about giving hundreds of kids a real shot at life and it’s about giving their families some sanity and some hope.

The alternative is akin to “drowning,” as one mother put it.

Or, as Rebecca Davis says, it’s “excruciating.” The Bloomington mother, along with Hughes, co-founded VIPS Indiana after two years of driving her daughter to Kentucky for therapy.

“I didn’t know what to do with my blind kid. I really needed help understanding how to motivate her to move or to eat. And you can’t just grab their hand,” she said. “You can’t just assume that they’re going to get you or watch you by mimicking, because that’s what kids do.”

Davis, tall with a commanding prescence, speaks in rushed sentences. But she paused to gather her thoughts and her emotions.

“When you’re a sighted parent, it doesn’t come naturally. You want to bond with your kid, you don’t get that loving, bonding look back at you,” she said. “There are people who can help, but you have to find them.”

Davis, through her connections in Kentucky, found Hughes. And then Fienman and other mothers eventually found them, mostly through word of mouth.

Most are educated, upper middle class women. Professionals with the know-how to find the resources they need for their children. It’s scary to think about the mothers without the means to do so.

“I felt like I was drowning and they (VIPS) were throwing me a rope,” Davis said. “So how can you not try to pay that forward?”

Fieman remembers what it was like before Hughes and Allie’s current therapist, Kelly Lloyd, came along. Her daughter, then almost a year old, wouldn’t crawl. She didn’t like to be touched. She wouldn’t hold her head up. And she wouldn’t respond to verbal cues.

“She just had no personality,” the Greenwood mother said. “She wouldn’t look at anything.”

Allie has plenty of therapists — occupational therapists, physical therapists, speech therapists — but it took a session with Hughes for Fieman to figure out what was going on with her daughter.

“When we first started, Annie had us put a red light bulb in Allie’s lamp in her bedroom. She said, ‘Turn it on every night when she goes to bed. It gives her something to focus on, so it gives her brain something very specific to do,’” Fienman said. “And it’s something about the color. She’ll just stare at that thing.”

Fieman learned that with Allie’s particular condition, cortical visual impairment, she can see yellows and reds. That fact, something that only trained teachers for the visually impaired would know, has shaped therapy sessions ever since.

The colors, especially when they are shown on bright displays that she can touch, are usually enough to pull Allie out of grouchy mood. That’s what happened the afternoon, I spent with her, her mother and her teacher, Kelly.

“It’s great to see her light up when this thing comes on,” Fienman said, watching Allie tap a a glowing LightAide board to change the colors. “She can see something and she gets so excited.”

Contact Star columnist Erika D. Smith at (317) 444-6424, erika.smith@indystar.com or on Twitter at @erika_d_smith.