By Devon Douglas & Leon Johnson
Baltimore Watchdog Staff Writers
The Problem
During the pandemic, the switch to remote learning for educators and students has been challenging. It’s been especially difficult for students with disabilities. Students with Down syndrome — and their parents — have in many cases had a difficult adjustment given the lack of resources they are used to at school.
For Tina Lutz, a mother of a child with Down syndrome, remote learning for her daughter was out of the question. Lutz knew that her daughter couldn’t sit in front of a computer for eight hours a day. It was hard to keep her engaged and she didn’t have access to the same resources like speech and language therapy that she had at school. Because of this, Lutz opted to take her daughter out of the school system and home school her for the year so she could receive necessary attention. That meant working a full-time job while educating her daughter.
This has been a repeated pattern this year for students with down syndrome and their families. Down syndrome, a congenital condition caused by the presence of an extra full or partial copy of chromosome 21, is somewhat rare. According to the CDC, about 6,000 babies are born with Down syndrome every year, which is about 1 in every 700 babies born. Also, between the years 1979 and 2003, there has been a 30 percent increase in the number of babies born with Down syndrome.
The struggles with online education were felt by both students, parents and teachers. Eliza Foster, a middle school special education teacher in Montgomery County, Maryland, said this has been the toughest year of her career. This is because the in-person curriculum she taught prior to the pandemic focused on learning for independence and life skills such as how to do laundry, how to clean and take care of yourself. Now, every day is a growing frustration for her and her students as most of these skills are hard to teach remotely. The biggest challenge Foster has identified with her students is a communication barrier.
“Figuring out a communication style that works is the main thing,” Foster said. “I can tell that they have needs that need to be met and they want to request something or engage in conversation but it’s hard to understand what they need and often if I can’t understand them. It gets frustrating for them.”
Her students would request assistance with simple things like help with assignments, what they want for lunch and help to zip up their jackets.
“It’s the little things that you don’t even think about requesting but when it comes time and that communicating breaks down its super frustrating because it seems like a basic thing people should be able to help with,” Foster said.
Prior to remote learning, gestures were an alternative for verbal communication for those students who can’t verbally communicate. But amid the pandemic it has been more difficult because special educators can’t see what students are pointing at.
“Everyone is different and has different disabilities,” Foster said. “There is no ‘one’ diagnosis.”
According to Foster, the main focus for special educators is to simply keep the students engaged and motivated in hopes that all students with Down syndrome can learn effectively. This focus is on collaboration between parents and special educators.
“I think it was a huge learning curve for me,” Foster said. “I never used Zoom until I had to use it as a teacher. So I would try to provide resources for families because there’s only so much we [teachers] can do on our end.”
Solution
Foster tried to find a solution so the communication barrier with her students — and their parents — didn’t prevent learning from happening. She wanted to help parents with being temporary educators so she created training videos instructing families how to teach their children and how to help with the assignments she sends out.
In short, she helped parents become co-teachers because they are in the room with students. But that’s not always easy.
Julie Wilhelm, a member of the Down Syndrome Network of Montgomery County and a mother of a double-diagnosed child with autism, said that her son Matt’s experience with remote learning was not only hard for him but for her and her husband.
“He was used to going to school every day and now it was just plugging in maybe half an hour a day and it was more up to the parents to go over the worksheets that the teachers were pushing out,” Wilhelm said.
Wilhelm’s experience as a parent-teacher for the past year was similar to the past year for all parents of children with Down syndrome. Parents were expected to be educators without any proper training on how to effectively teach their children.
“The parent educators spend much more time with the children than the special educators…so we always had a great relationship with the team…because we’re all trying to educate this one child,” Wilhelm said. “We certainly had disagreements but were all on the same team.”
Although Wilhelm didn’t receive instructional videos from her son’s special educators, they still had ongoing communication through emails about whatever was necessary to help Matt’s learning.
“Me and my husband’s experience this past year was like many others because we heard from other parents of students with Down Syndrome that remote learning was just not working and something needed to be done,” she said.
Insights/ Evidence of Effectiveness
Foster’s goals were met as she has seen positive reactions from the instructional videos she’s created. She has received emails from families thanking her for her efforts.
“I got a bunch of emails from parents saying that my videos made life for them a lot easier,” Foster said. “I was even told that some of my students that normally can’t operate technology by themselves eventually got better using it because I simplified everything so much in my videos.”
Prior to Foster creating instructional videos for families, the students’ work didn’t meet the standards she was hoping for during the year. However, once she began sending videos out to families, students’ work improved tremendously.
“It was a miracle,” Foster said. “It was like everything switched.”
Some of Foster’s coworkers adopted the idea of instructional videos and saw the same results. She wishes she started making the videos as soon as she heard remote learning was the preferred method of teaching.
After seeing the results of the videos she learned how important collaboration between educators and parents really is.
“I see now that it’s simple,” Foster said. “If we want students to succeed we have to work together.”
Limitations
Instructional videos have their upside, but there are limitations. For Foster, creating the videos requires a lot of time. She has to do everything on her own and it can sometimes take hours to record, edit and send out the videos to everyone. The Montgomery County Public School System does not provide her any assistance when making instructional videos even though it could be beneficial for educators like Foster and families of children with Down syndrome. She said that it would have been nice if training was provided to the families by school systems prior to starting online learning.
Another limitation to this solution is a language barrier. Many students are first-generation native English speakers but their parents are not. Furthermore, if parents are being sent instructional videos to assist their very young child with Down syndrome who may be non-communicative, they can’t translate the instructions or advocate for their child.
Though parents became temporary educators for their children throughout the course of remote learning, they still worked full-time jobs. Wilhelm said that it was very frustrating for many parents to work their job at home and to assist their children with learning. Students that are on the side of the spectrum of not being able to operate technology by themselves require parents help and for many parents it’s not possible to do both successfully.
Lutz, a member of the Chesapeake Down Syndrome Parent Group, has also seen difficulty adapting to parenting and teaching her daughter. In Lutz’s situation, once remote learning came into the conversation, she and her husband decided to enroll their daughter as a homeschool student.
“It’s been a challenge because of the way she learns, it’s a whole different way of learning than I’m used to and so that’s been a challenge for me and really this year has been a challenge for me in terms of educating her,” Foster said.
Lutz was surprised to know how much her daughter was capable of, and she never knew how hard it was to educate a child with Down syndrome. She wishes she had some kind of instruction such as the videos Foster creates for her students families.
Organizations like the National Down Syndrome Society are also trying to help students with Down syndrome learn effectively remotely as they’ve created a distance learning webinar with one of the main focuses being parent participation.