When 11-year-old Xigrid Soto moved to the continental United States from Puerto Rico with her family, her new community and the school lacked the support she needed.
“I was placed in a classroom for special needs by accident,” Soto said. “I had to teach myself English, and that was a hard experience. And so, from that, I was really determined to have it not happen to other people.”
Now a postdoctoral fellow at the Juniper Gardens Children’s project, Soto is a passionate researcher on bilingualism, early literacy, and language development. Her researches focus on promoting the educational outcomes for young bilingual children in the U.S.
In her nine years of experience as a bilingual pediatric speech-language-pathologist, or SLP, and as an early childhood researcher, Soto has seen a rise in the number of bilingual children in the U.S. At the same time, she has also noticed that other SLPs receive limited training and materials for assessing and treating bilingual children who have communication impairments.
“Although we have a really large bilingual population in the United States, most SLPs aren’t really trained on how to work with bilingual kids or adults,” Soto said. “So, what happens is that there’re a lot of misdiagnoses,” Soto said.
There are several aspects that make bilingual children with communication impairments different from their monolingual counterparts. To have a communication impairment, bilingual children need to demonstrate difficulties communicating in both languages. However, assessments are often created with only monolingual children in mind. This makes it more challenging for speech-language pathologists who are typically only trained to work with monolingual children.
That led to a recent $15,000 2020 Multicultural Grant Award from the American Speech-Language-Hearing Association (ASHA), awarded by the national professional organization for speech-language pathologists.
The one-year study, conducted by Soto and her colleagues Anne Larson, a research associate at the University of Minnesota, and Meaghan McKenna, a postdoctoral research fellow at Juniper Gardens, aims to complete a national survey of SLPs to determine their training, confidence, and barriers when assessing and treating bilingual children. The second objective of the study is to apply the results of the survey to develop a professional development program. The program aims to train both monolingual and bilingual SLPs in working with bilingual children. Soto hopes the study will assist both practicing SLPs by helping them feel more competent and confident when working with bilingual children and their families.
“I want the results of the study, specifically the survey, then to be distributed through our national organization and then to university programs for us to really evaluate the curriculum that we’re using right now to train SLPs,” Soto said.
Her passion is to get more students from diverse linguistic, ethnic, and cultural backgrounds to be interested in the field.
“I think traditionally, lots of people are applying a monolingual English lens to the world and we really need to move past that: to look at people as being multilingual, and really be culturally sensitive and responsive in the way that we work with them,” she said.
What important for SLPs is to find and use strategies that are supportive and specifically catered to bilingualism. That way, even if a practitioner doesn’t speak a child’s language, the SLP can still support the child.
In addition to the current study, Soto is also in close partnership with the bilingual early childhood center located in Kansas City, El Centro. She has also developed Habla DLL, a website that offers free materials and resources to parents, teachers, and SLPs who work with young bilingual children. These activities are part of her mission to translate research into common practice, and to improve the support for academic and social needs of bilingual children.
“To me, you shouldn’t do research that doesn’t have an impact in this world,” Soto said. “I’m very privileged for many reasons, and I want to use that privilege so that when important educational decisions are made, I can speak up on behalf of people who aren’t always heard.”
Story by Ha Tran
Illustration by Elizabeth Newell
Investigators at a KU education research center have distilled twenty years of education research into a new book focused on an equity-based system to support all students.
Amy McCart, co-director of SWIFT Education Center, and Dawn Miller, associate director of technical assistance, co-authored Leading Equity-Based MTSS for All Students. The book aims to show how school leaders can create equity-based multi-tiered system of support, or MTSS, using the resources they already have in their schools.
MTSS is an organizing framework that uses data to inform decisions coordinating academic, behavioral, and social resources to meet the needs of students in a dynamic and timely fashion. An equity-based MTSS provides access to the core curriculum with a continuum of support for students across the full range of learning needs.
“In this book, we aim to show how to create equity-based MTSS that makes a lasting impact on each student and bring about a culture of schooling that demonstrates high levels of academic, behavioral, and social outcomes,” McCart said. “Equity-based MTSS becomes a means to an end: equity-based thinking, doing and achieving.”
A field guide to research on the scope, methods and etiology of addiction published by Cambridge University Press and featuring chapters written by three KU scientists aims to be a comprehensive resource for researchers in this broad field. The Cambridge Handbook of Substance and Behavioral Addictions, edited by Steve Sussman, includes chapters authored by David P. Jarmolowicz, Derek D. Reed, and Michael Amlung, all scientists at KU’s Cofrin Logan Center for Addiction Research and Treatment at the Life Span Institute. They are among 100 authors from six countries who address topics such as philosophical and legal issues in the field, behavioral economics, the strengths and weaknesses of clinical and research methods, neurobiology, cognition, environment, as well as the prevention and treatment of addictions both familiar and seldom studied.
"This new handbook provides a comprehensive account of current scientific understanding of causes, consequences, and treatments for a range of addictive disorders," said Amlung, associate director for training at the Cofrin Logan Center and associate professor of applied behavioral science. "We are excited to contribute multiple chapters to this volume alongside many of the world's leading scientists and clinicians in the field."
On July 26, 1990, the passage of the Americans with Disabilities Act marked a new era for people with disabilities. The landmark legislation prohibiting discrimination based on disability aimed to assure that that people with disabilities have the same rights and opportunities as everyone else. The law covered several areas of public life, including employment, education, transportation, and public and private places that are open to the general public.
The KU Life Span Institute has conducted research aimed at improving the lives of people with disabilities for more than 60 years. Together with many units at the University of Kansas, we are marking this anniversary through our media and programs. Please join us for:
Look Back, Look Forward: The ADA at 30
"Look Back/Look Forward: The ADA at 30,” will be held at 3 pm October 14. This virtual panel features:
- Jean Hall, director of the Institute for Health and Disability Policy Studies and professor in the KU Department of Applied Behavioral Science
- Lex Frieden, professor of biomedical informatics and professor of physical medicine and rehabilitation at the University of Texas Health Science Center at Houston
- Anjali Forber-Pratt, assistant professor at the Department of Human & Organizational Development at Vanderbilt University
- Rebecca Cokley, director of the Disability Justice Initiative at the Center for American Progress
The panel will be moderated by Michael Wehmeyer, chair of the KU Department of Special Education, Ross and Marianna Beach Distinguished Professor in Special Education, and director and senior scientist at the Beach Center on Disability.
Advance registration is required for this free event.
Lifelong Disability Rights Champion Judith Heumann to Participate in Campus Celebration
Judith Heumann, internationally recognized disability rights leader and activist, will celebrate the 30th anniversary of the Americans with Disabilities Act (ADA) with the University of Kansas and Lawrence communities and guests worldwide Oct. 28-29.The Life Span Institute is a proud co-sponsor of “ADA 30 – Nothing About Us Without Us – A Celebration with Judith Heumann,” scheduled for Oct. 28-29. The events, which may be held virtually because of COVID-19, include a keynote by Heumann and additional programming to be announced in fall 2020. The two-day celebration is organized by the KU ADA Resource Center for Equity and Accessibility and 44 other campus and community partners. More information and an event schedule are on the event website.
Ray Mizumura-Pence, associate teaching professor of American Studies and co-Director of the Disability Studies Seminar at the Hall Center for the Humanities, prepared a list of resources across books, websites, film and other media for those who would like to learn more about the Americans with Disabilities Act and people with disabilities.
For Brian Boyd, director of the Juniper Gardens Children’s Project at the KU Life Span Institute, a passion for autism research ignited at a summer camp job during his undergraduate years. It led to a career dedicated to early interventions for children diagnosed with autism spectrum disorder and a focus on community-based research.
In this interview, Boyd reflects on the beginning of his career and the direction of his research today. This interview has been condensed and edited for clarity.
Where did your interest in autism start?
In the middle of my undergraduate degree, I went to work at a summer camp for children with autism. The first week I had a camper who was nonverbal. He also had an intellectual disability and seizure disorder. It was a tough week. He tried jumping in the camp pond, he threw a chair at me and ended up having a seizure that landed him in the hospital. He had a tantrum in the middle of the hospital. It was then that I realized this is what I wanted to do for the rest of my life.
The experience had a deep impact on me. There was something fascinating about autism, people with autism and even though it was challenging and difficult, it felt meaningful. And so I knew after that first week I wanted to keep doing it.
How did you get your start in research?
After the recommendation of a mentor at the camp, I called Dr. Gary, the director of TEACCH, the statewide autism clinical, training, and research program based at the University of North Carolina. He essentially interviewed me on the spot and offered me the job. He really took a chance on me.
For a year and a half I did a variety of things. I was officially a predoctoral intern but I really just worked in several capacities: in the preschool classroom where we did an early research study, at an adult residential center that served aging adults with autism, and as a job coach for people with autism. It allowed me to get a wide range of experience working with people with autism.
What are your interests in autism spectrum disorder?
In general, my work is focused on intervention — I work with families or educators to help them implement the best practices for helping young children with autism.
I also want to better understand the children with autism that have what we term repetitive behaviors and circumscribed interests - a narrow, intense focus on a subject, for example.
Early in my career I met a preschooler whose first word was ‘pentagon’ -- not ma-ma or da-da but pentagon. So I wanted to know what it is about these sort of atypical interests that would motivate this to be a child’s first word. I want to research how to best leverage these behaviors to potentially improve other kinds of skills.
Why did you choose to join Juniper Gardens?
Research at Juniper Gardens has had a huge impact on the field of early childhood special education, so I was already familiar with the work being done here. The other main appeal was the chance to be a part of a research center where the work is very community focused and community engaged. Involving community members in the early stages and development of our research is important to myself and Juniper Gardens.
It's really about not just giving back, but exploring how we collect our knowledge as researchers to work with community partners and bring about real change.
As a volunteer at an Olathe, Kan., nursing home, 19-year-old Isaac Swindler enjoyed helping people by escorting residents to the chapel, bringing them meals, and assisting with laundry. But when the nursing home was forced to limit the number of visitors to the facility in response to the spread of COVID-19, Isaac became one of the millions of Americans to lose his position – and his routine.
That sudden change to daily life can be difficult for anyone, but for someone like Isaac, who has autism spectrum disorder, it can be an extraordinary disruption, said Issac’s father, Sean Swindler. Individuals with autism often struggle with rapid, unpredictable changes to their routine, he said.
“Social distancing needs to happen to keep everybody safe, and we are absolutely in support of it,” Sean said. “However, it really is a challenge for kids with autism and their families because they're losing so many opportunities for interaction that can't be reproduced at home.”
In addition to the experience of being a parent of a child with autism, Sean is the director of community program development for the Kansas Center for Autism Research and Training, or K-CART, a research center at the Life Span Institute. The center has been fielding questions about how to adjust as children’s access to opportunities is completely upended by stay-at-home orders, the closure of businesses, and converting school classrooms to online instruction. The center has created a list of COVID-19 resources for families.
We reached out to Associate Professor Rene Jamison, a licensed psychologist for the Center for Child Health and Development in Pediatrics at the KU Medical Center and an investigator at K-CART, for tips for parents who are navigating these changes. She and other researchers will offer a webinar for families on April 10, “Managing the Coronavirus as an Individual with ASD or Caregiver.” She also provided the following guidance, which has been edited and condensed:
How can I help my child adjust to change?
It will be important for parents and families to prioritize what’s most important to keep up with. I know a lot of our families are really worried about the long days at home together, lack of structure and missing their educational opportunities. Some families are experiencing financial stress or a need for childcare. Priorities will be different for each family.
Adjusting to these changes will be easier if you can identify tasks to accomplish in smaller chunks of the day, taking the to do list in stride. For example, when everyone is awake, you can establish that everyone will make their bed, brush their teeth and then cook breakfast.
Identify new opportunities and the positive changes that result from sheltering at home. Try to spend more time together and connect with children. Focus on those basic needs.
How do I help my child maintain social skills during this time?
There is no doubt that kids with autism are not spending as much time engaged in social interaction or extracurricular activities. During this time, parents can model interaction and connection with their friends and family, incorporating their kids into this as well. That way you're all engaged together.
For some, virtual classrooms or video calling friends can be overwhelming, so just circle back to prioritizing what the child gets the most out of or enjoys. Find out how other kids or teens their age are connecting in order to get ideas and create opportunities around interests or existing friends.
How do I help my child establish a routine?
Parents and caregivers can identify priorities based on family and child needs. If possible, engage the child in creating a schedule and consider what will work best based on schedules of other family members as well. It doesn’t have to mirror the school day; academics or learning can be mixed in with time for connection and provide space for children to choose what they want to do. For example, this might look like writing and reading time in the mornings, then cooking lunch together and a walk outside.
It doesn’t need to be overly specific or scheduled to the minute, but should give enough structure so that children can see what's coming up that day.
How do I assist my child when preferred choices and activities are not available?
It’s frustrating for kids to not be able to do what they want right now. So while they may not be able to engage in preferred activities in the community, you can build scenarios at home that give them choices. Whether it’s setting up a pretend store with stuff from around the house or letting them choose what to eat for dinner some night, addressing and validating their frustration should be at the core of these experiences.
Keeping kids engaged by asking them what they might need, or checking in on them throughout the day with affirmations or physical touch will ease this transition. If possible, create activities for children or get out materials or toys to use within certain settings or time of day. Small groupings of tasks and activities will help things move slowly.
Most importantly, take things slowly and care for each other during this time. Daily living skills and leisure activities can be equally important when children might not be working on academic-driven skills. Parents and caregivers can look for opportunities that allow the family to learn together and to incorporate the child’s interests.
A recording of the webinar can be found here.
Written by Grant Heiman
Apprehension is expected before a traveler boards a flight, whether it’s anxiety about airline safety or worrying about a delayed flight.
Yet for people who depend on wheelchairs to move through the world, the possibility of damage to their chairs poses the biggest stressor of them all. Wheelchairs aren’t just an object or item to be checked like a suitcase for a flight; they are an extension of the user and a vital part of their daily lives.
Once a user has boarded a plane, their wheelchair usually is loaded into the baggage area of the plane. The chairs may be disassembled or damaged in the process. Power chairs can be expensive; custom machines can cost upwards of $20,000.
Dot Nary, assistant research professor at the Life Span Institute’s Research and Training Center on Independent Living (RTC), is among many people who have experienced the challenges of mishandled wheelchairs.
“Once we went to Washington D.C., and the joystick on a person’s power chair was just totally bent over,” Nary said. “The more severely disabled you are, the more you need a custom chair, so this person’s replacement chair didn’t fit her and she was basically confined to her hotel room the whole time.”
Nary has seen her own chair and those belonging to colleagues dismantled and loaded onto the plane piece by piece with no labels on the parts. Upon arrival at one destination, Nary carefully checked her chair and realized her colleague’s chair had been put together with Nary’s wheels.
“Wheelchair users will never have equal opportunity to participate in travel for work, recreation and other purposes if they have to risk their mobility due to airline negligence,” Nary said.
U.S. Senator Tammy Duckworth (D-IL), whose own chairs have been damaged by airlines, spearheaded legislation that took effect in December 2018 that required airlines to track how many wheelchairs were damaged, lost or delayed. A veteran and double amputee, Duckworth understands the problems that wheelchair users face, said Jean Hall, director of the Institute for Health and Disability Policy Studies at the Life Span Institute.
“She knows all too well the myriad problems with air travel,” Hall said. “If she hadn’t called attention to it, I doubt many people in power would really care.”
The legislation led to a recent report from the U.S. Department of Transportation that highlighted just how nerve-racking flying can be for wheelchair users. Roughly 7,700 wheelchairs were mishandled from January to September in 2019, averaging out to 29 wheelchairs per day.
Ranita Wilks, an advisory board member at the RTC, said her brand-new manual chair was damaged when the airline deconstructed the chair for transport. The footrest, left wheel and main frame were all damaged.
“My four-day trip to Washington, D.C., was spent on the phone with Global Repair Group trying to coordinate repairs to my chair,” she said. “While there, they sent a repair company to my hotel room which informed me they couldn’t repair the wheelchair.” The damage ultimately took three months to fix.
Nary said such experiences pose an issue to equality in terms of travel and employment. Some people may opt to avoid airline travel altogether because of their concerns for their mobility. But without travel, an individual may miss out on networking, research, education or other opportunities, Nary said. For a population that experiences high unemployment – 65% percent of individuals with disabilities are unemployed – that is a critical issue for a person’s career, and their lifestyle.
“Air travel is necessary for people with disabilities to be able to work and play in the same ways that people without disabilities do,” Hall said. “Yet, existing policies to assure equal access to air travel are, as shown, largely ineffective.”
At the Research & Training Center on Independent Living, researchers work to enhance independent living initiatives for individuals with disabilities. For airline travel, the center developed a fact sheet for individuals to know their rights under the Air Carrier Access Act in case an issue arises.
“One important step in making change is empowering people with disabilities to know their rights and speak up when airlines do not meet the spirit and intent of the law.” Hall said. “We are also committed to giving a voice to people with disabilities through our research so that barriers like this one continue to get the attention they deserve.”
Story by Grant Heiman
Illustration by Elizabeth Newell
A pioneering research project at KU may one day give voice to individuals robbed of their speech by neuromuscular diseases such as ALS, also known as Lou Gehrig’s disease.
Led by Jonathan Brumberg, the project is an attempt to use technology to bridge the gap between people who know how to speak, but cannot move the jaw, lips and tongue needed to produce that speech.
To get there, Brumberg, assistant professor of speech-language-hearing, and his team are recruiting with people diagnosed with disorders such as ALS or brain-stem stroke with locked-in syndrome to study what parts of the brain are involved in speaking. The research will then use those signals to control a “virtual” vocal tract computer simulation. This would allow someone to control the jaw, lips and tongue of a computerized vocal tract in order to create speech.
In Brumberg’s laboratory, study participants wear an electrode cap while they imagine producing speech. This cap, which looks like a swim cap, has 64 electrodes in it that measure brain activity. The cap and electrodes help identify what parts of the brain are being used when participants, who cannot talk or have difficulty talking, are asked to imagine creating speech.
"To start the training, we work with letter combinations such as 'ama' and 'ana,'" Brumberg said. "This is similar to 'b' and 'd' babbling that babies do except that 'm' and 'n' are nasalized versions. Then as participants get good at the task, they'll switch to 'amu' and 'ani.' The 'u' uses the lips, like 'm' does, and 'i' uses the front of the tongue like 'n' does."
The overarching goal of this work is to allow people to communicate using the virtual vocal tract at a conversational speed, but Brumberg says that would be very far in the future. It would take months or even years to teach the patients how to use this technology in order to effectively communicate. Right now, he and his team are focused on producing simple consonants and vowels.
One of the rewarding aspects of the research, said Brumberg, is working with the study participants. The participants donate eight weeks of their time coming to over fifteen sessions with Brumberg and his team. The average life span of someone diagnosed with ALS is five years.
“They are all enthusiastic,” Brumberg said. “For some of them, they have a disease for which there is no cure, and they know that, but this is something they can be a part of. Being a part of it now actually could make a difference later.”
Story by Maddie Van Nortwick
Illustration by Elizabeth Newell
The child in the chair looks like she’s preparing to play a video game. She leans toward the monitor in a darkened room, the dim light of the screen illuminating her face. A dot appears on screen. But instead of zapping the dot with a game controller, she tracks its movement only with her eyes. Throughout the test, a camera mounted to the monitor records the movement in fine detail: the pace, the direction, the focus.
This test is one of several conducted at the Brain and Behavior Laboratory directed by Matt Mosconi, who also leads the Kansas Center for Autism Research and Training at KU. The goal of the work is to better understand the motor problems experienced by individuals with autism spectrum disorder and to determine their bases in the brain. These motor problems include not only repetitive behaviors such as hand flapping and rocking, but also challenges with fine and gross motor skills such as walking, eating, and lifting and holding objects.
The studies have the long-term potential to teach us about the causes of both motor and related behavioral issues in autism spectrum disorder and to develop more objective, biologically based markers for developing effective treatments.
Now Mosconi, together with a team of investigators at KU and KU Medical Center, are recruiting research participants -- both those diagnosed with autism spectrum disorder, and those who do not have an autism spectrum disorder, who will serve as controls. The research is part of a $2.3 million grant from the National Institutes of Health that has been underway for two years.
In addition to the eye movement test, participants complete simple tests of movement, thinking, and brain function. Testing occurs at both at Dr. Mosconi’s laboratory off of KU’s main campus in Lawrence and at the Hoglund Brain Imaging Center at the KU Medical Center. Dr. Mosconi’s team will help coordinate each visit and will walk interested individuals through all of the procedures.
If you know an individual diagnosed with autism spectrum disorder between the ages of 10-35 years or an individual without autism spectrum disorder who would like to participate in the research, please reach out to the study coordinators by filling out this form so that a researcher can contact you, or contact them directly with any questions at 785.864.4461 or email@example.com.
We have all had moments when we chose to skip the gym and eat the piece of cake or take the extra helping, even though we knew that we wanted to lose weight.
These decisions are impacted by delay discounting: in this case, the reward of eating fattening food is immediate, while the pay-off of good health and weight maintenance associated with exercising and avoiding unhealthy foods are largely delayed.
Excessive delay discounting can stem from not being able to imagine a future self; If you can’t picture a healthier version of yourself, you may be less likely to work on improving your health today. Lower income, unstable environments, and limited access to resources are associated with greater delay discounting, and over time, this can lead to chronic diseases such as tobacco addiction and obesity.
But what if we could train our memory -- our working memory -- to reduce delay discounting? That question is at the heart of a study funded by a four-year, $2 million grant from the National Institutes of Health to KU and other universities that examines whether strengthening working memory may play a role in reducing delay discounting in medically underserved populations in Baltimore, Maryland.
Working memory is essential for complex brain tasks such as comprehension, learning and reasoning. It contributes to our ability to successfully navigate the world, like how to plan and execute complex activities, to attend to important information and to multi-task.
Richard Yi, director of the Cofrin Logan Center for Addiction Research and Treatment, is the primary architect of the first published results showing the potential of working memory training to reduce delay discounting. Yi leads the study with partners at the University of Maryland-Baltimore, Michigan State University, and the University of Florida.
The ongoing research explores working memory training via computerized training exercises, and whether improving working memory will reduce delay discounting and health-compromising behaviors.
For the first stage of the study, participants at a community drop-in center serving low income and homeless individuals in Baltimore completed up to 15 sessions of a working memory training program. Early findings, published in the Annals of Behavioral Medicine, showed that the program led to improvements in working memory, which in turn, decreased the rate of delay discounting. It also demonstrated the feasibility of implementing working memory training in real-world community settings.
Ultimately, if working memory training can strengthen self-control, it could be applied to chronic conditions such as obesity and addiction.
The study has expanded to a second community center in Baltimore, and expected to expand to a third this winter.