http://www.gazette.net/stories/06242010/montnew124852_32558.php
Rockville couple, documentary highlight struggles of couples with Down syndrome
Rockville couple Bruce Wallace, 32, and Liz Golder-Wallace, 31, can't imagine life without each other.
"It was love at first sight," Wallace said.
"Bruce!" Golder-Wallace exclaimed, embarrassed.
"What? It was!" he said.
But marriage is complicated for this couple. "Married" about five years ago in a commitment ceremony, Wallace and Golder-Wallace were both born with Down syndrome, a genetic disorder that causes delays in physical and intellectual development. Daily tasks like shopping and cooking require supervision, and the couple is unable to stay overnight at their apartment without someone in the next room, they said.
Still, the couple has worked hard over the past five years to get to the point they are at today. They rent their own apartment, hold steady jobs, perform in community theater and lead incredibly busy lives.
"All my life, I wanted to live on my own, and now it gets to happen," Wallace said, smiling next to his wife on their burnt orange leather sofa. "... The best part of my life is knowing that we have our strengths, and we have some weaknesses, and we're learning to be advanced independent."
Independence among couples with Down syndrome is a complex issue and filmmaker Alexandra Codina attempted to tackle the topic in her award-winning documentary about a married couple with Down syndrome, "Monica & David," which is showing at the Silverdocs film festival this week in Silver Spring.
In the film, newlyweds Monica and David struggle with the same tasks found daunting by the Rockville couple: cooking, working, driving, wanting a family and trying to declare independence, even when concerned parents know it's not always an option.
"As parents, because we want to protect them so much, we are typically the first ones who treat them poorly by subconsciously denying them their rights to have a normal life," Monica's mother says during an interview in the documentary. In "Monica & David," the couple lives with Monica's mother and trips outside the home without supervision are rare.
Althea Wallace, Bruce's mother, said she could relate to the mother's urge to shelter her child.
"I'm always weighing the over-protectiveness and the letting them have their own life," she said. Golder-Wallace said she struggles to cope with her parents dictating things like what kind of food she should be eating and how often she should go to the gym.
Codina said limitations by outside forces, rather than by the individuals themselves, is at the center of the documentary's theme. Supplementing parental fears, there is also a lack of understanding by the general public, she said.
"Even though things are improving, or have improved, we still have a lot to go in terms of society's openness and awareness of how similar individuals are to Monica and David," she said in a phone interview Tuesday. The job hiring process, in particular, is an area where the public underestimates the abilities of individuals with Down syndrome, she said.
Compared to Monica and David, the Rockville pair said they are more independent. Wallace and Golder-Wallace met in preschool and reconnected in middle school. They've been dating ever since, they said.
They rent their apartment in their own name and pay their own bills, Althea Wallace said. Wallace works two days a week at La Madeleine French café.
"I bus ze tables, I empty ze trash, I do ze everything," he said in his best French accent. One day a week he sets up equipment at Discovery Communications in Silver Spring. Golder-Wallace works mornings at the Kensington Park Branch Library and volunteers with her father for the county government. The couple said they love the location of their apartment and enjoy seeing concerts and outdoor movies in the town square right outside their door.
Autonomous living isn't as easy as it sounds. Their second bedroom is occupied rent-free by someone who keeps his eyes and ears open for any accidents during the night. A separate counselor drops in six nights a week to supervise meal preparation, aid with shopping and provide rides to activities. One night a week, the couple stays with their parents. The couple can legally marry without losing its Developmental Disabilities Administration; benefits, Althea Wallace said. Having children is also out of the question, the couple said.
But, as in the movie, love conquers all. Despite the limitations of their situation, both couples are giddy with excitement over spending the rest of their lives with their significant other.
Judging by the way Golder-Wallace rests her head on her husband's shoulder as they watch "Monica & David," or the way they smile as they read their commitment vows, it's hard to imagine them living any other way.
"Monica & David," directed by Alexandra Codina, screens 8 p.m. June 25 and 11:30 a.m. June 26 at AFI Silver Theatre as a part of the AFI-Discovery Silverdocs Documentary Festival in Silver Spring.
Wednesday, July 14, 2010
Cooking club builds life skills for students with autism
http://www.philly.com/inquirer/local/20100701_Cooking_club_helps_autistic_children_build_life_skills.html
Cooking club helps autistic children build life skills
Brownie pizza was the featured entree at a recent cooking club meeting in Burlington County.
Four tiny chefs scrambled around the kitchen in the Medford community center, grating their white chocolate "cheese" and taking a quick break for "pin the pepperoni on the pizza."
Brownie pizza may not be the most essential recipe for a 9-year-old to master, but Rosy Gruber says the cooking is secondary for her son, Jason.
"I tell people he's going to a cooking class and they think, 'Oh, he's learning to cook.' No, he's learning to be a competent human being," she said.
The class is part of a program organized by KidsAhead Consulting & Center for Development, which works with autistic children and their families to foster emotional development and basic life skills. KidsAhead offers consultations and parent education, with supplemental summer programs such as the cooking club, a crafts club, and a summer camp.
KidsAhead approaches autism using Relationship Development Intervention. Instead of an approach that focuses on reinforcing or discouraging specific behaviors, RDI takes a more general approach to education in the hope that children will learn to apply patterns of behavior to different situations.
KidsAhead's RDI programming focuses on strengthening the "core deficits" that most autistic children struggle with, such as problem solving and emotional development. Though the cooking club is not officially an RDI program, Gruber said cooking is a good way to start because it can improve an autistic child's "flexible thinking."
"Some kids, for example, if they bake cookies the first time, then every time they bake they think it has to be cookies, it always has to be the same bowl," she said.
She also said the social aspect has helped Jason, who has always struggled with making friends. She said Jason had gotten especially attached to a 10-year-old with Down syndrome who was sporting a bright green polka-dot apron as she meticulously arranged her pizza.
"I was like, 'So, do you like Annie?' He said, 'I love Annie.' . . . He said, 'I like all the kids in cooking club,' " said Gruber.
Because Jason struggles with anxiety and panic attacks, he has not been able to attend school. So Gruber and Jason have been together all day, every day, for almost 10 years. She said his autism was so severe that he was nonverbal for the first four or five years of his life, and they had to communicate with sign language.
"Before, he used to be very withdrawn, introverted. He's more part of the family, he's more social. Definitively much more talkative," she said.
Founder and director Libby Majewski says KidsAhead, which has about 30 clients, tries "to give parenting back to the parents."
"What has been really great to see is that we have many parents who now say that they have a relationship with their child," she said.
Gruber says KidsAhead has been especially helpful for Jason because its programming takes into account his struggles with anxiety and panic. Still, she said, Jason will always have to deal with his autism.
"We're not looking for a cure," she said. "There is no cure. We're looking for remediation."
Cooking club helps autistic children build life skills
Brownie pizza was the featured entree at a recent cooking club meeting in Burlington County.
Four tiny chefs scrambled around the kitchen in the Medford community center, grating their white chocolate "cheese" and taking a quick break for "pin the pepperoni on the pizza."
Brownie pizza may not be the most essential recipe for a 9-year-old to master, but Rosy Gruber says the cooking is secondary for her son, Jason.
"I tell people he's going to a cooking class and they think, 'Oh, he's learning to cook.' No, he's learning to be a competent human being," she said.
The class is part of a program organized by KidsAhead Consulting & Center for Development, which works with autistic children and their families to foster emotional development and basic life skills. KidsAhead offers consultations and parent education, with supplemental summer programs such as the cooking club, a crafts club, and a summer camp.
KidsAhead approaches autism using Relationship Development Intervention. Instead of an approach that focuses on reinforcing or discouraging specific behaviors, RDI takes a more general approach to education in the hope that children will learn to apply patterns of behavior to different situations.
KidsAhead's RDI programming focuses on strengthening the "core deficits" that most autistic children struggle with, such as problem solving and emotional development. Though the cooking club is not officially an RDI program, Gruber said cooking is a good way to start because it can improve an autistic child's "flexible thinking."
"Some kids, for example, if they bake cookies the first time, then every time they bake they think it has to be cookies, it always has to be the same bowl," she said.
She also said the social aspect has helped Jason, who has always struggled with making friends. She said Jason had gotten especially attached to a 10-year-old with Down syndrome who was sporting a bright green polka-dot apron as she meticulously arranged her pizza.
"I was like, 'So, do you like Annie?' He said, 'I love Annie.' . . . He said, 'I like all the kids in cooking club,' " said Gruber.
Because Jason struggles with anxiety and panic attacks, he has not been able to attend school. So Gruber and Jason have been together all day, every day, for almost 10 years. She said his autism was so severe that he was nonverbal for the first four or five years of his life, and they had to communicate with sign language.
"Before, he used to be very withdrawn, introverted. He's more part of the family, he's more social. Definitively much more talkative," she said.
Founder and director Libby Majewski says KidsAhead, which has about 30 clients, tries "to give parenting back to the parents."
"What has been really great to see is that we have many parents who now say that they have a relationship with their child," she said.
Gruber says KidsAhead has been especially helpful for Jason because its programming takes into account his struggles with anxiety and panic. Still, she said, Jason will always have to deal with his autism.
"We're not looking for a cure," she said. "There is no cure. We're looking for remediation."
Teens with Autism get help with college
http://www.post-gazette.com/pg/10184/1070125-298.stm
Teens with mild autism get early help to deal with stresses of college
Sixteen-year-old Nick Goga isn't anxious about going to college anymore, thanks to a summer program at Robert Morris University.
"I think I can really survive college now," he said.
Nick, of Whitehall, a junior at Baldwin-Whitehall High School, is participating in ACCLAIM, a summer program designed for students with Asperger's disorder and high-functioning autism. Asperger's disorder is at the milder end of the autistic spectrum disorder and affects a person's ability to socialize and communicate effectively.
ACCLAIM -- or Autism College and Community Life Acclimation and Intervention Model -- was founded in 2008 by the Watson Institute, an organization that focuses on educating children with special needs. The program, formerly located at the University of Pittsburgh, is being held this summer at Robert Morris, Community College of Allegheny County and Mercyhurst College in Erie.
The goal of ACCLAIM is to prepare students with autistic spectrum disorders for the transition to college life. The program also aims to relieve anxiety about college, as it did for Nick.
ACCLAIM focuses on seven areas: social interaction, communication, executive functioning, daily living, emotional regulation, college and community acclimation, and job and career preparation. Because the students' disabilities are more social than intellectual, "the academic component is not a barrier to success for these students," said Lori Zychowski, supervising psychologist and curriculum designer for ACCLAIM.
Issues that these students do struggle with include meeting new people and adjusting to a new environment.
Nicole Jarock, ACCLAIM coordinator, said the program is a mix of classroom learning and hands-on experiences. Students typically go over one or two lessons each day, take exams, participate in discussions and complete worksheets. Topics include applying to college, using resources at college, managing money, handling stress and dealing with peers in a new social setting.
"Most of the learning happens through experiencing," Dr. Zychowski said. Experiences include campus tours, scavenger hunts and the responsibility of managing a daily lunch stipend.
David West, of Robinson, a senior at Montour High School, said going into the "real world" has helped him.
"It helps me manage my money very well. It helps us to interact with people we don't know," he said.
The students range in age from 16 to 19 years old and include high school sophomores, juniors, seniors and recent graduates.
This year, for the first time, 10 students are participating in a three-week-long overnight program at Mercyhurst for those who are considering attending college away from home.
At Robert Morris and CCAC, the daily program runs Monday to Friday for four weeks. Nine students are participating at CCAC, and seven at Robert Morris. The students don't necessarily choose to apply to the college they visit; the schools serve as close-to-home host schools, Ms. Jarock said.
Dr. Zychowski, who has been with ACCLAIM since it started, said the program has been successful. "Anecdotally, we hear about former participants. A couple have enrolled in college and are doing well," she said.
Teens with mild autism get early help to deal with stresses of college
Sixteen-year-old Nick Goga isn't anxious about going to college anymore, thanks to a summer program at Robert Morris University.
"I think I can really survive college now," he said.
Nick, of Whitehall, a junior at Baldwin-Whitehall High School, is participating in ACCLAIM, a summer program designed for students with Asperger's disorder and high-functioning autism. Asperger's disorder is at the milder end of the autistic spectrum disorder and affects a person's ability to socialize and communicate effectively.
ACCLAIM -- or Autism College and Community Life Acclimation and Intervention Model -- was founded in 2008 by the Watson Institute, an organization that focuses on educating children with special needs. The program, formerly located at the University of Pittsburgh, is being held this summer at Robert Morris, Community College of Allegheny County and Mercyhurst College in Erie.
The goal of ACCLAIM is to prepare students with autistic spectrum disorders for the transition to college life. The program also aims to relieve anxiety about college, as it did for Nick.
ACCLAIM focuses on seven areas: social interaction, communication, executive functioning, daily living, emotional regulation, college and community acclimation, and job and career preparation. Because the students' disabilities are more social than intellectual, "the academic component is not a barrier to success for these students," said Lori Zychowski, supervising psychologist and curriculum designer for ACCLAIM.
Issues that these students do struggle with include meeting new people and adjusting to a new environment.
Nicole Jarock, ACCLAIM coordinator, said the program is a mix of classroom learning and hands-on experiences. Students typically go over one or two lessons each day, take exams, participate in discussions and complete worksheets. Topics include applying to college, using resources at college, managing money, handling stress and dealing with peers in a new social setting.
"Most of the learning happens through experiencing," Dr. Zychowski said. Experiences include campus tours, scavenger hunts and the responsibility of managing a daily lunch stipend.
David West, of Robinson, a senior at Montour High School, said going into the "real world" has helped him.
"It helps me manage my money very well. It helps us to interact with people we don't know," he said.
The students range in age from 16 to 19 years old and include high school sophomores, juniors, seniors and recent graduates.
This year, for the first time, 10 students are participating in a three-week-long overnight program at Mercyhurst for those who are considering attending college away from home.
At Robert Morris and CCAC, the daily program runs Monday to Friday for four weeks. Nine students are participating at CCAC, and seven at Robert Morris. The students don't necessarily choose to apply to the college they visit; the schools serve as close-to-home host schools, Ms. Jarock said.
Dr. Zychowski, who has been with ACCLAIM since it started, said the program has been successful. "Anecdotally, we hear about former participants. A couple have enrolled in college and are doing well," she said.
Vermont Needs to Have Better Transition Plans
http://www.burlingtonfreepress.com/article/20100713/NEWS02/7130305/Vermont-special-education-falls-short-in-review
Vermont special education falls short in review
Vermont schools must do more to help special-education students set post-secondary goals, and the Vermont Education Department needs to ensure this transition planning takes place.
That's one of the conclusions the U.S. Education Department reached in an annual review of Vermont's compliance with federal special-education law. Among other things, the review found Vermont was deficient in ensuring timely initial evaluations of students seeking special-education services and in submitting timely and accurate data to the federal government.
The shortcomings put Vermont in the "needs assistance" category for implementation of the Individuals with Disabilities Education Act (IDEA) for the second consecutive year. Federal officials ordered Vermont to seek "technical assistance" to remedy the problems or face more dramatic action next year, such as restrictions on federal grant money.
State education officials said Monday that schools in at least a dozen supervisory unions would undergo required training to improve and document transition plans required for special-education students as they near school completion.
Susan Marks, co-director of special education at the Vermont Education Department, said this work will help ensure that outcomes for students as they leave the public education system "are as good as they can be."
About 15 percent of Vermont public-school students qualify for special-education services because of a disability. These range from relatively mild problems to severe handicaps. Transition plans are supposed to help students access jobs, social services and education once they leave school.
State officials say even if the transition plans themselves are not as complete as they should be, the statistics suggest many students are successfully making the shift from school to the adult world. A 2007-08 state report said 87 percent of youths who were on IEPs and no longer in secondary school had moved on to employment and/or post-secondary schooling.
Meanwhile, the state and the federal government have worked out an agreement to improve reporting of student performance, state officials say. Vermont had been deliberately withholding some standardized testing data on the grounds that it could identify students.
"Some of it would get down to identifying a student in third grade with a particular disability not scoring well on the NECAP (New England Common Assessment Program). At a small school in Vermont, everybody knows who everybody is, and it was potentially identifiable," said Mike Bailey, special education data manager for the Vermont Education Department.
Vermont now will send the information to the federal government and rely on it to suppress identifying features under the recently brokered agreement. "Previously they had not committed to do anything like that," Bailey said.
The Vermont Education Department posted information about the federal review and enforcement action on its website Friday. For information, go to http://education.vermont.gov.
Vermont special education falls short in review
Vermont schools must do more to help special-education students set post-secondary goals, and the Vermont Education Department needs to ensure this transition planning takes place.
That's one of the conclusions the U.S. Education Department reached in an annual review of Vermont's compliance with federal special-education law. Among other things, the review found Vermont was deficient in ensuring timely initial evaluations of students seeking special-education services and in submitting timely and accurate data to the federal government.
The shortcomings put Vermont in the "needs assistance" category for implementation of the Individuals with Disabilities Education Act (IDEA) for the second consecutive year. Federal officials ordered Vermont to seek "technical assistance" to remedy the problems or face more dramatic action next year, such as restrictions on federal grant money.
State education officials said Monday that schools in at least a dozen supervisory unions would undergo required training to improve and document transition plans required for special-education students as they near school completion.
Susan Marks, co-director of special education at the Vermont Education Department, said this work will help ensure that outcomes for students as they leave the public education system "are as good as they can be."
About 15 percent of Vermont public-school students qualify for special-education services because of a disability. These range from relatively mild problems to severe handicaps. Transition plans are supposed to help students access jobs, social services and education once they leave school.
State officials say even if the transition plans themselves are not as complete as they should be, the statistics suggest many students are successfully making the shift from school to the adult world. A 2007-08 state report said 87 percent of youths who were on IEPs and no longer in secondary school had moved on to employment and/or post-secondary schooling.
Meanwhile, the state and the federal government have worked out an agreement to improve reporting of student performance, state officials say. Vermont had been deliberately withholding some standardized testing data on the grounds that it could identify students.
"Some of it would get down to identifying a student in third grade with a particular disability not scoring well on the NECAP (New England Common Assessment Program). At a small school in Vermont, everybody knows who everybody is, and it was potentially identifiable," said Mike Bailey, special education data manager for the Vermont Education Department.
Vermont now will send the information to the federal government and rely on it to suppress identifying features under the recently brokered agreement. "Previously they had not committed to do anything like that," Bailey said.
The Vermont Education Department posted information about the federal review and enforcement action on its website Friday. For information, go to http://education.vermont.gov.
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