Daughter's disability fuels mother's desire to bring program to Siouxland
By Lynn Zerschling Journal staff writer | Posted: Sunday, February 29, 2004
Eunice Barnes, with daughter Quelse and music teacher Merlyne Smith, has worked to bring programs for people with autism and related disabilities to Siouxland. (Staff photo by Jerry Mennenga)
When she was a ninth-grader in Florida, Eunice Barnes was a member of the first class of 40 African-Americans who went to the all-white Oscala High School.
"It was court ordered integration," Barnes, now of Sioux City, recalled. "We had been coached on how to act in going to that school."
Practicing a nonviolent and peaceful approach came easily for the teen-ager.
"My uncles and cousins led a lot of civil rights marches. I went on some marches in 1967 and 1968. Our family always had been involved in a nonviolent way in the civil rights movement. That's what we were raised on."
Using those skills honed as a teen-ager, Barnes learned she had to be persistent in obtaining needed educational and other services for her youngest child, Quelse. At the age of 3, Quelse (pronounced Kelsey), was diagnosed with autism. Quelse now is 21.
Repeatedly through Quelse's early years and beyond, Barnes learned she had to become an advocate for needed services. Instead of getting mad or giving up, she persevered. She conducted more research, involved more parents, talked to doctors and educators and created a learning environment for her daughter. It wasn't easy.
In the end, Barnes created something that will impact more than just her child.
She researched, wrote and submitted an application that resulted in the award of a $300,000 federal grant to open the Autism & Related Disabilities Service Center (ARDSC) in Sioux City. Barnes is ARDSC's executive director.
The path leading to that federal grant held twists and turns and a few detours along the way.
As a parent of a special needs child, Barnes said, "You find yourself navigating through the maze of programs and services and what we have found is that there are not enough services and programs that specifically address the needs of individuals with autism."
Barnes has more skills than many parents to tackle that bureaucratic jungle. She has been a special education teacher in the Sioux City School District for 20 years and teaches at Hunt Elementary School.
Regarding her daughter's autism, Barnes revealed, "I look at it as a blessing. it has taught me a whole lot about being strong."
The early years
Barnes was born in 1951 to Robert and Lois Woodbury. Her father, who now is 88, was a barber. Her mother, who is deceased. worked in the public schools. Growing up in central Florida, she had heard of Sioux City, Iowa. Her uncle, the Rev. James McLamb, was the pastor of Mount Zion Baptist Church and member of the Briar Cliff College Board of Trustees.
"He kept sending me information on the scholarships that were available at Briar Cliff," Barnes recalled. "He convinced me and my brother to come to Sioux City."
She enrolled in Briar Cliff where she encountered something of a cultural shock.
"A girl from Ethiopia and me were the only blacks in our class. ...It was a different attitude up here. You don't have a neighborhood for minorities in Sioux City. All the races live to together, not like in Florida."
Barnes graduated in 1972 with a bachelor of arts degree in psychology and elementary education. One of her first jobs was as the service coordinator for the Area Council on Aging. She planned to return home. But those plans changed after a friend introduced her to Wilson Barnes, a native of Mississippi, and they married. Her husband is a chemist at Terra Industries. Their oldest daughter, Quira, was born in 1975, and their son, Anthony was born in 1979. Quelse was born in 1982.
Barnes taught at Grant Elementary School , later working as a special education teacher at Woodrow Wilson Middle School and now at Hunt grade school. From 1994 through 1998, she was the Minorities in Teaching coordinator for the school system and since 1998, she has coordinated the Future Teachers Program.
She obtained her master's degree in education with an emphasis on learning disabilities from Morningside College in 1984, an administrative license's from Drake University in 1990 and a specialist degree in education administration from Wayne State College in 1997.
In between teaching and parenting, she founded the Christian Child Care Center and was on the board for Habitat for Humanity. She is an active member at Mount Zion church and is a member of the city's Human Rights Friends Task Force.
Daughter diagnosed
When Quelse was 3, the Barnes noticed something wasn't quite right.
"She wasn't quite responding. She had regressed. She was highly sociable and wanted to be held. She was a picky eater. I had a friend with autism, but as a parent, you want to disbelieve it. Finally, we took her to Iowa City and then to UCLA," she said of the University of Iowa Hospitals and Clinics and the University of California-Los Angeles.
At UCLA, "She underwent a battery of tests. They diagnosed her with autism and developed an educational plan for her."
Quelse, who does not speak, does have eye contact and understands people talking to her. She has cognitive deficiencies.
When Quelse was 5, Barnes talked to school officials about developing an educational program targeting her abilities. At a 1987 meeting, she says, school officials told her they could not use autism in formulating an educational plan because that was not an approved category.
The Barnes joined two other sets of parents in filing a federal complaint to require the district to use autism as a category since other states did. They also filed a discrimination complaint alleging that their children were not receiving an appropriate education.
The parents won their cases. Federal law guarantees children with disabilities the right to receive a free and appropriate education. Now that the elementary schools could develop plans for children with autism, the next challenge was middle school.
"Classrooms are good at the primary level not, but the middle school level is not where it should be" in educating children with autism, she contended. At times, she became frustrated with the stumbling blocks she encountered. "That's why I was working so hard myself to help the students that I serve in school. I was amazed and disappointed that others didn't. The program just wasn't there for Quelse."
At one point, Barnes contacted a state consultant with the Iowa Department of Education and asked him to evaluate the special education programs offered for autistic students.
"I told him to be totally objective about this," she stressed. "I told him what I'm seeing is that this program is not good for any student."
After conducting the review, the state official agreed and recommended changes.
On several occasions, Barnes said others told her to place Quelse in an institution.
" 'Just put her away,' they said. Well, as long as I have my health and am willing to do this, I think Quelse is entitled to have the support she needs. I don't think we should put Quelse away. My daughter has a number of strengths. I felt it was important to work on those."
Home schooling
When Quelse was 16, Barnes concluded the public schools weren't providing the kind of environment she wanted for her daughter.
"I took a leave of absence for three years to teach her at home. We had an educational plan that included music. I found Merlyne Smith to teach it. .Quelse loves music."
Smith said she has seen Quelse progress.
"She doesn't feel rhythm," Smith, owner of Merlyne Smith Studios, says. "All of life is a balance. There's a rhythm to life. If Quelse can create that rhythm, she can learn to see that in her own life."
Smith's lesson plans concentrate on having Quelse clapping in time to the music or hitting a drum in time to the music. Using scarves to make circles to the music is another way Smith teaches Quelse to feel the beat.
Although Quelse does not speak, she does make some sounds. Smith has been working with Quelse to sing her name. Remarkably, her mother says, Quelse is responding to that music therapy.
"She now claps in church to the hymns, She just loves that.".
Quelse sees a speech therapist and has an exercise plan through the Siouxland Y. She also volunteers at St. Luke's Regional Medical Center working in the supply processing and distribution center, affixing labels to products.
Now that Quelse has turned 21, she no longer is provided school services.
"One of the issues I want to change is that I believe the federal law says they have to provide it through age 21 -- not to 21."
Involving other parents
Throughout Quelse's life, Barnes said, "It's been a continuous fight to get services for her. I believe in her. Even if she doesn't reach those goals I have set for her, she deserves to be treated with dignity."
As a teacher and parent, Barnes said she discovered than many other parents of special needs pupils have fought the same battles.
"I found that people with disabilities need programs. I found there were not enough services in this area. If you don't know what questions to ask, you don't get the right services."
In February 2002, Barnes met with some parents to discuss formation of a task force and to look at submitting grant applications for funds. She talked to agency directors, including Opportunities Unlimited, which was started by parents and now operates group homes for young people with brain injuries.
"I was waiting for somebody to start it. Finally, I concluded that if it was going to get done, I was going to have to do."
In writing the grant application, she says, "I found out it's a very complex and very competitive process. I ended up applying for $100,000 for one year."
She didn't expect to get the money.
The surprise
While visiting relatives in Florida last summer, Barnes received a surprise telephone call. Not only had her grant application been accepted -- she got three times as much money as she had asked for -- $100,000 a year for three years.
U.S. Sen. Charles Grassley, R-Iowa, announced that the Autistic and Related Disabilities Service Center would use the grant to start the Community Parent Resource Centers Grant Program. The project's goal is to encourage family involvement in early identification and the educational development of children with autism and related diseases. The program serves Sioux City and residents of Woodbury County.
At that point, things started to happen. Among the parents who became involved was Tom Gould, whose son, Zachary, 16, had been diagnosed with Asperger's Syndrome.
"There is so much misinformation out there. Asperger's isn't high functioning autism. Every kid is different. It's like saying well, this kid plays football so he must be like all other football players."
Zachary, he noted, received all A grades last semester, but needs assistance in socialization.
"He's really an amazing kid. ..East High has been a tremendously great thing for him. The kids at east are awesome."
Having said that, Gould acknowledged that the road to East High wasn't easy and that the middle school years were rough for his son.
Gould, who is a grasslands conservationist with the Natural Resource Conservation Service, said parents "are hungry for information." After he found out about Barnes through Smith -- who also teaches Zachary music lessons -- he became involved in the project. Gould has been elected chairman of the ARDSC's Board of Directors.
The goals
"We have a number of goals," he said. "We have to define what the board's responsibilities are. We have to develop a strategic plan and allocate the resources we have efficiently."
One of the goals is to develop a support group for families and parents. The first meeting was held at the Wilbur Aalfs Library Feb. 10.
"We want to help parents not just survive, but to make life easier for them and to help their kids prosper. We want to educate them. Disabled kids so often end up being a blessing."
In the short term, the board is considering holding an event during Autism Awareness Month in April. In the long-term, Gould would like to create a junior high school for teens with autism and related disorders. Barnes has an even bigger goal.
"I want to get a facility like Opportunities Unlimited. We want to have a home that can serve a maximum of 50 people. ...We want to be realistic," she acknowledged. "We obviously won't be able to do it all at once."
In the beginning, she admitted, "We're taking baby steps."
But, those baby steps are big. Just a year ago the creation of the center with an office and paid staff was nothing more than a dream. Barnes proved that dreams do come true.
The next meeting of the family support group will be at 7 p.m. March 9 at the Wilbur Aalfs Library. Parents who have children with disabilities are invited to attend. To volunteer or for more information, call the ARDSC Office at (712) 255-7722.
Lynn Zerschling may be reached at (712) 293-4202 or lynnzerschling@siouxcityjournal.com
"It was court ordered integration," Barnes, now of Sioux City, recalled. "We had been coached on how to act in going to that school."
Practicing a nonviolent and peaceful approach came easily for the teen-ager.
"My uncles and cousins led a lot of civil rights marches. I went on some marches in 1967 and 1968. Our family always had been involved in a nonviolent way in the civil rights movement. That's what we were raised on."
Using those skills honed as a teen-ager, Barnes learned she had to be persistent in obtaining needed educational and other services for her youngest child, Quelse. At the age of 3, Quelse (pronounced Kelsey), was diagnosed with autism. Quelse now is 21.
Repeatedly through Quelse's early years and beyond, Barnes learned she had to become an advocate for needed services. Instead of getting mad or giving up, she persevered. She conducted more research, involved more parents, talked to doctors and educators and created a learning environment for her daughter. It wasn't easy.
In the end, Barnes created something that will impact more than just her child.
She researched, wrote and submitted an application that resulted in the award of a $300,000 federal grant to open the Autism & Related Disabilities Service Center (ARDSC) in Sioux City. Barnes is ARDSC's executive director.
The path leading to that federal grant held twists and turns and a few detours along the way.
As a parent of a special needs child, Barnes said, "You find yourself navigating through the maze of programs and services and what we have found is that there are not enough services and programs that specifically address the needs of individuals with autism."
Barnes has more skills than many parents to tackle that bureaucratic jungle. She has been a special education teacher in the Sioux City School District for 20 years and teaches at Hunt Elementary School.
Regarding her daughter's autism, Barnes revealed, "I look at it as a blessing. it has taught me a whole lot about being strong."
The early years
Barnes was born in 1951 to Robert and Lois Woodbury. Her father, who now is 88, was a barber. Her mother, who is deceased. worked in the public schools. Growing up in central Florida, she had heard of Sioux City, Iowa. Her uncle, the Rev. James McLamb, was the pastor of Mount Zion Baptist Church and member of the Briar Cliff College Board of Trustees.
"He kept sending me information on the scholarships that were available at Briar Cliff," Barnes recalled. "He convinced me and my brother to come to Sioux City."
She enrolled in Briar Cliff where she encountered something of a cultural shock.
"A girl from Ethiopia and me were the only blacks in our class. ...It was a different attitude up here. You don't have a neighborhood for minorities in Sioux City. All the races live to together, not like in Florida."
Barnes graduated in 1972 with a bachelor of arts degree in psychology and elementary education. One of her first jobs was as the service coordinator for the Area Council on Aging. She planned to return home. But those plans changed after a friend introduced her to Wilson Barnes, a native of Mississippi, and they married. Her husband is a chemist at Terra Industries. Their oldest daughter, Quira, was born in 1975, and their son, Anthony was born in 1979. Quelse was born in 1982.
Barnes taught at Grant Elementary School , later working as a special education teacher at Woodrow Wilson Middle School and now at Hunt grade school. From 1994 through 1998, she was the Minorities in Teaching coordinator for the school system and since 1998, she has coordinated the Future Teachers Program.
She obtained her master's degree in education with an emphasis on learning disabilities from Morningside College in 1984, an administrative license's from Drake University in 1990 and a specialist degree in education administration from Wayne State College in 1997.
In between teaching and parenting, she founded the Christian Child Care Center and was on the board for Habitat for Humanity. She is an active member at Mount Zion church and is a member of the city's Human Rights Friends Task Force.
Daughter diagnosed
When Quelse was 3, the Barnes noticed something wasn't quite right.
"She wasn't quite responding. She had regressed. She was highly sociable and wanted to be held. She was a picky eater. I had a friend with autism, but as a parent, you want to disbelieve it. Finally, we took her to Iowa City and then to UCLA," she said of the University of Iowa Hospitals and Clinics and the University of California-Los Angeles.
At UCLA, "She underwent a battery of tests. They diagnosed her with autism and developed an educational plan for her."
Quelse, who does not speak, does have eye contact and understands people talking to her. She has cognitive deficiencies.
When Quelse was 5, Barnes talked to school officials about developing an educational program targeting her abilities. At a 1987 meeting, she says, school officials told her they could not use autism in formulating an educational plan because that was not an approved category.
The Barnes joined two other sets of parents in filing a federal complaint to require the district to use autism as a category since other states did. They also filed a discrimination complaint alleging that their children were not receiving an appropriate education.
The parents won their cases. Federal law guarantees children with disabilities the right to receive a free and appropriate education. Now that the elementary schools could develop plans for children with autism, the next challenge was middle school.
"Classrooms are good at the primary level not, but the middle school level is not where it should be" in educating children with autism, she contended. At times, she became frustrated with the stumbling blocks she encountered. "That's why I was working so hard myself to help the students that I serve in school. I was amazed and disappointed that others didn't. The program just wasn't there for Quelse."
At one point, Barnes contacted a state consultant with the Iowa Department of Education and asked him to evaluate the special education programs offered for autistic students.
"I told him to be totally objective about this," she stressed. "I told him what I'm seeing is that this program is not good for any student."
After conducting the review, the state official agreed and recommended changes.
On several occasions, Barnes said others told her to place Quelse in an institution.
" 'Just put her away,' they said. Well, as long as I have my health and am willing to do this, I think Quelse is entitled to have the support she needs. I don't think we should put Quelse away. My daughter has a number of strengths. I felt it was important to work on those."
Home schooling
When Quelse was 16, Barnes concluded the public schools weren't providing the kind of environment she wanted for her daughter.
"I took a leave of absence for three years to teach her at home. We had an educational plan that included music. I found Merlyne Smith to teach it. .Quelse loves music."
Smith said she has seen Quelse progress.
"She doesn't feel rhythm," Smith, owner of Merlyne Smith Studios, says. "All of life is a balance. There's a rhythm to life. If Quelse can create that rhythm, she can learn to see that in her own life."
Smith's lesson plans concentrate on having Quelse clapping in time to the music or hitting a drum in time to the music. Using scarves to make circles to the music is another way Smith teaches Quelse to feel the beat.
Although Quelse does not speak, she does make some sounds. Smith has been working with Quelse to sing her name. Remarkably, her mother says, Quelse is responding to that music therapy.
"She now claps in church to the hymns, She just loves that.".
Quelse sees a speech therapist and has an exercise plan through the Siouxland Y. She also volunteers at St. Luke's Regional Medical Center working in the supply processing and distribution center, affixing labels to products.
Now that Quelse has turned 21, she no longer is provided school services.
"One of the issues I want to change is that I believe the federal law says they have to provide it through age 21 -- not to 21."
Involving other parents
Throughout Quelse's life, Barnes said, "It's been a continuous fight to get services for her. I believe in her. Even if she doesn't reach those goals I have set for her, she deserves to be treated with dignity."
As a teacher and parent, Barnes said she discovered than many other parents of special needs pupils have fought the same battles.
"I found that people with disabilities need programs. I found there were not enough services in this area. If you don't know what questions to ask, you don't get the right services."
In February 2002, Barnes met with some parents to discuss formation of a task force and to look at submitting grant applications for funds. She talked to agency directors, including Opportunities Unlimited, which was started by parents and now operates group homes for young people with brain injuries.
"I was waiting for somebody to start it. Finally, I concluded that if it was going to get done, I was going to have to do."
In writing the grant application, she says, "I found out it's a very complex and very competitive process. I ended up applying for $100,000 for one year."
She didn't expect to get the money.
The surprise
While visiting relatives in Florida last summer, Barnes received a surprise telephone call. Not only had her grant application been accepted -- she got three times as much money as she had asked for -- $100,000 a year for three years.
U.S. Sen. Charles Grassley, R-Iowa, announced that the Autistic and Related Disabilities Service Center would use the grant to start the Community Parent Resource Centers Grant Program. The project's goal is to encourage family involvement in early identification and the educational development of children with autism and related diseases. The program serves Sioux City and residents of Woodbury County.
At that point, things started to happen. Among the parents who became involved was Tom Gould, whose son, Zachary, 16, had been diagnosed with Asperger's Syndrome.
"There is so much misinformation out there. Asperger's isn't high functioning autism. Every kid is different. It's like saying well, this kid plays football so he must be like all other football players."
Zachary, he noted, received all A grades last semester, but needs assistance in socialization.
"He's really an amazing kid. ..East High has been a tremendously great thing for him. The kids at east are awesome."
Having said that, Gould acknowledged that the road to East High wasn't easy and that the middle school years were rough for his son.
Gould, who is a grasslands conservationist with the Natural Resource Conservation Service, said parents "are hungry for information." After he found out about Barnes through Smith -- who also teaches Zachary music lessons -- he became involved in the project. Gould has been elected chairman of the ARDSC's Board of Directors.
The goals
"We have a number of goals," he said. "We have to define what the board's responsibilities are. We have to develop a strategic plan and allocate the resources we have efficiently."
One of the goals is to develop a support group for families and parents. The first meeting was held at the Wilbur Aalfs Library Feb. 10.
"We want to help parents not just survive, but to make life easier for them and to help their kids prosper. We want to educate them. Disabled kids so often end up being a blessing."
In the short term, the board is considering holding an event during Autism Awareness Month in April. In the long-term, Gould would like to create a junior high school for teens with autism and related disorders. Barnes has an even bigger goal.
"I want to get a facility like Opportunities Unlimited. We want to have a home that can serve a maximum of 50 people. ...We want to be realistic," she acknowledged. "We obviously won't be able to do it all at once."
In the beginning, she admitted, "We're taking baby steps."
But, those baby steps are big. Just a year ago the creation of the center with an office and paid staff was nothing more than a dream. Barnes proved that dreams do come true.
The next meeting of the family support group will be at 7 p.m. March 9 at the Wilbur Aalfs Library. Parents who have children with disabilities are invited to attend. To volunteer or for more information, call the ARDSC Office at (712) 255-7722.
Lynn Zerschling may be reached at (712) 293-4202 or lynnzerschling@siouxcityjournal.com
Story Comments
Read More and Post Comments 0 comment(s)
Please note: The following are comments from readers. In no way do they represent the views of The Sioux City Journal or Lee Enterprises. We will not edit or alter your comments, but we do reserve the right to not post or to remove comments that violate our code of conduct. No comment may contain potentially libelous statements; obscene, explicit or racist language; personal attacks, insults or threats. Terms of Service
