CLARK, Mo. — Maryann Yoder, 5, will join her sister Edna, 7, and other Amish children in a local one-room schoolhouse in a few years. But until then, speech therapist Anna Crusha provides a different education for the girls, just for the two of them, in their tidy home every Thursday.
Crusha, working for the Sturgeon R-V School District, uses board games and other activities to improve their speech. The sisters are both partially deaf.
Deafness is among several genetic and hereditary disorders plaguing the Amish community, which generally rejects, at varying levels, modern technologies such as electricity or motorized vehicles.
As the number of Amish has grown to an estimated 300,000 nationwide, so too have the number of Amish children diagnosed with genetic-based disorders. That growth poses a challenge for cash-strapped, largely rural, community-funded educational services such as the school district here in north-central Missouri where Crusha works.
The girls’ mother, Lizzie Yoder, said Maryann and Edna have greatly improved since working with Crusha. When the girls were younger, the Old Order Amish family learned sign language to be able to communicate with the girls, but since then, Edna and Maryann have learned to communicate through speech.
Yoder said the most difficult part was answering the girls’ questions in a way they could understand. Now, the sisters’ main challenge is using complete sentences, rather than just speaking in individual words.
“Like saying ‘the horse is sick’ instead of ‘horse sick,’” Yoder said.
Expensive hearing aids
Though Amish children attend their own schools and are exempt from attending school after the eighth grade, the Sturgeon school district and others like it provide speech therapists and other related services to Amish families in their district until they leave school.
Crusha works part time for the district and provides services to a few Amish families. The Amish are part of what the public school district considers “parentally placed” private school children.
Once the school district is made aware that the families need the services, children starting in kindergarten receive a special-needs plan. The district reserves a part of each year’s budget to provide these services free for families — whether they are Amish or not.
But hearing aids can get expensive. Generally, the Amish don’t buy health insurance, and hearing aids can range from $1,000 to $6,000 per ear. Yoder said there were a lot of options, but with help they found some relatively cheap devices at about $1,000.
Deafness runs in both sides of the Yoder family, affecting mostly extended family members. But Yoder said she didn’t think much of it until two of her children were diagnosed with it.
Prone to disorders
The Amish are largely descended from fewer than 100 Pennsylvania settlers in the 1700s, according to Matthew Sware, development director for the Clinic for Special Children in Strasburg, Pa. Those insular genetics predispose them to higher levels of problems, such as deafness, than the general U.S. population.
The Clinic for Special Children is one clinic working to combat and study genetic disorders among the Amish and Mennonites. About 2,500 patients with some 150 different disorders rely on the clinic, located in the heart of Amish Country near Lancaster.
Genetic disorders include well-understood issues such as deafness and Down syndrome, as well as lesser-known diseases like Maple Syrup Urine Disease (which can kill babies who are not properly diagnosed early) to Glutaric acidemia, which can cause severe brain damage.
Sware said it took a long time to build trust with the community in Pennsylvania, but now the clinic staff are able to provide educational information to the Amish about disease needs and available services.
“In 1990, these diseases that started the clinic services that we have were pretty devastating. There were brain injuries these kids developed, or the disease basically manifested as cerebral palsy,” Sware said.
But he said now 40 percent of the diseases they see are treatable, both because of a greater understanding of these diseases and because Amish parents have a place to take their children for early intervention.
There are similar clinics all over the United States, helping Amish communities. Some clinic staffers gather once a year to discuss new findings or to ask questions they might be struggling with.
Sware said depending on the diversity of a community’s genetic pool, some of the genetic diseases may be specific to a certain area; others overlap.
Special needs, schools
Amish communities began their own one-room schoolhouses separate from “the English” (as non-Amish are known) in the 1930s. But students with special needs often continued to attend the public schools with English children.
In 1975, the Amish decided to do something on their own about students with special needs when an Amish community in Lancaster County opened the first Amish special education school.
“If you look at it from the Amish perspective, school-based learning is to prepare a person to have the reading and math skills to be a productive Amish citizen,” said Mark Dewalt, a professor in the College of Education at Winthrop University in Rock Hill, S.C. “So, Amish believe that if we’re doing this for these students, we ought to see how we can meet the needs of the special-needs students.”
Once the Amish saw the success in Pennsylvania, it spread to other communities.