voice for young student
By Jack Kintner
Emma Welter is a charming young lady from Birch Bay who has been in school for four of her six years.
Currently a kindergartener at Blaine primary school, Emma was born with a very rare brain disorder known as schizencephaly that has left her unable to speak.
But when you see her in class, she’ll tap away on what looks like a laptop until suddenly it says “Hi!” for her, “my name is Emma!”
Emma is a student
in Becky Grasher’s kindergarten
class, and works with Steve Bedow, a para educator, and
Shannon Mihelich, one of two speech and language pathologists
(SLP) employed by the district.
Along with colleague Jane Rooney, the two SLPs carry a caseload of about 120 students. Mihelich has two other students who use digital voice generators made by Dynavox of Pittsburgh, PA.
Less than 500 people nationally have schizencephaly, and in Emma’s case it’s left her with little control over the left side of her body.
She’s of normal intelligence and can both write and
spell, but in learning to speak she also has to learn grammar
and syntax, something the machine can help with by providing
options as she composes sentences.
“Hers is a very rare condition,” said her neurologist, Dr. Rick Braun of Bellingham, “and is thought to happen when the brain is forming. It doesn’t grow in place, like a balloon inflating, but migrates into place as the lobes join and grow, but in her case the joining is incomplete, leaving a cleft or division.”
Because her difficulty is structural, there is little chance for any improvement and she must make the best of what she has, Braun said.
Emma has been in therapy for most of her life but it has also meant that she can join her peers in regular classes.
She began training in a birth to age three program in Bellingham, then went to a developmental pre-school for two years before coming to a regular kindergarten class this school year. But she says, when you ask, “Yes! I like school!”
“The digital voice machines look like laptops but are highly specialized,” said Joanne Kaufmann of Dynavox, “because they’re designed to meet the communication needs for people with a variety of difficulties.”
Basically, the only thing the operator can do is talk with it, Kaufmann explained, but it can interface with just about any body part that can be controlled, even a blinking or shifting eye. On the back is an infra-red transmitter and receiver than can control just about any other kind of device similarly equipped.
Kaufmann said that the best-known example of someone who uses such equipment is the astrophysicist Stephen Hawking, who also uses a digitally generated voice.
One drawback, as with most things medical, is the cost of the device. Emma’s family was able to purchase a unit for $9,000 through Medicare, but this is not always possible, and some of the students in Blaine only have intermittent access.
“It’s tough when we have to take them away and send them back to a central library,” said Rooney, “and also in the summer, when these kids have nothing to fall back on.” Rooney is currently seeking grants to support purchase of the devices to make them available to children in the district.
Mihelich said that one of the best things about the digital machines is that they allow people like Emma to do anything on a computer that a normal operator can do.
“It gives her a voice so she can participate, even speak out of turn in class or tattle on someone,” Mihelich said. “That’s not behavior we want to encourage, but it is evidence of her becoming part of a peer group. The challenge, in her case, is keeping up with her.”