12 min read
Rob Gorski is a single dad. He lives with his three autistic sons — Gavin, 20, Elliot, 14, and Emmett, 12 — in Canton, Ohio. Because Gavin is immunocompromised, the family has been on total lockdown for 172 days. And the way Gorski describes the last four months is: “Chaos. Not like controlled or organized chaos. It’s sort of a nightmarish scenario for a lot of parents like myself because, for autistic kids specifically, routine is vital to everybody being able to function. They were used to going to school and having this process and hanging out with their friends, and they lost all of that.”
Before the pandemic, the boys went to a charter school that specializes in autism education, but when Gorski realized that they would be doing distance learning for the long haul, he found a more established virtual school. Last week, Elliot and Emmett started at Ohio Connections Academy, a free online public school. “They’re working out some kinks due to the unexpected influx of students,” Gorski says. “I have mixed feelings on how much responsibility falls on parents, but their teachers were calling me today to make sure everything’s okay, and it seems like a cool experience. They sort of manage their own schedules during the day, and there’s electives they can take. I just have to get my kids over the emotional roadblock of making this change when it’s not something they wanted to do.”
Gorski’s youngest son Emmett has particularly struggled with adjusting to the new normal. “With COVID, there’s a lot of increased anxiety,” Gorski says, “Emmett is a brilliant kid, but he has a lot of anxiety and gets frustrated easily. He’s very sensory oriented, so clothing can be painful on his skin. Feeding him has always been difficult. Meltdowns have been a very common occurrence in our house, several times a day. And now that he’s not able to see family and friends and things like that we are seeing more meltdowns and outbursts. So just yesterday, actually, I told him, dammit, we’re gonna start back with Mightier.”
Gorski discovered Mightier, a clinically tested “biofeedback” video game developed at Harvard Medical School and Boston Children’s Hospital, two years ago. Gorski writes a blog called The Autism Dad, so he gets approached by brands marketing themselves to autistic and special needs kids. He says he doesn’t buy into many promises, but the institutions backing Mightier caught his eye. The idea of the program is to teach kids coping mechanisms for emotional responses. They play the games while wearing a heart monitor, and when their heart rate goes up as they get frustrated or even overly excited, they’re prompted to stop and practice deep breathing. Once their heart rate slows, they can start again.
“For Emmett, it just clicked,” Gorski says. “He’s been in therapy his whole life, but it took him wanting to play these games so badly that he was willing to do what it took. He began to recognize how he was feeling, and he could see his heart rate displayed in real time on the screen. There was one time after he started using it that I heard him fighting with his brother. I heard him yell and then suddenly get quiet. I got scared, so I went in and saw him sitting on a couch, with his eyes closed, taking some deep breaths. I was like, wow, holy crap. That is just the coolest thing I’ve ever seen. So we’re pulling Mightier out again now. I’m even thinking about using it.”
Emmett playing Mightier // Image Credit: Courtesy of Rob Gorski
Throughout the pandemic, most students — and their parents — have struggled with distance learning, to put it lightly. There have been exceptions, and when reporting this story I did hear from parents who said their children were more comfortable at home. But for the vast majority of students with disabilities, being out of the classroom can severely impede development. For autistic children making progress on their social-emotional skills, the loss of in-person interactions and carefully curated routines is devastating. For students who are nonverbal or minimally verbal, participating is near to impossible on most virtual platforms. Special education teachers are trained to help students develop all kinds of life skills that many of us take for granted, from self-management to executive function and impulse control.
For students who have Individualized Education Plans (IEP), it has taken enormous oversight on the part of parents to keep them on track. According to a recent survey from Fluent Research, “Parents of students who had Individualized Learning Plans (IEP) were significantly more likely to report that distance learning allowed their child to keep up with their learning goals. This progress did not come without a great deal of work and stress, however. Parents of students with IEPs expressed higher levels of frustration with online distance learning, especially when it came to simultaneously managing their child’s work and their own work from home.”
Diana Prowitt understands this first hand, as a mother of a 13-year-old autistic son and a Master IEP Coach. Prowitt is based near Pittsburgh, but consults with families and school districts across the country. She said that many parents she works with are working full-time, are frontline workers and essential workers. It’s been tough on everyone — including her, as she works from home and helps her son Aidan with school — but she’s seen parents react to the crisis in one of two ways: “They’ve either gone Betty Crocker or Chicken Little. The Betty Crockers are doing hot lunches, they’re organized, all in it, kicking butt. Then you have the Chicken Littles, who are running around and won’t even open their minds to the possibility that they can succeed at this with minimal effort. They say, ‘I can’t, I can’t, this is impossible and the school is stupid.’ So what I’m trying to do is get the Betty Crockers to come down a little bit, like, “You don’t have to do all of that! Let’s just focus on what’s really important.’ And to get the other people to see that with a little bit more patience and reasonable expectations we’ll be okay. There’s a balance. And we probably won’t get it right until we don’t have to do it anymore.”
So what can help parents and their special needs kids find balance? The art and science of distanced learning is still in its infancy. But whenever a societal need arises, there will be entrepreneurs who step in or pivot to fill the gap. More traditional educational platforms are rolling out enhanced virtual offerings to support special needs learners, and all kinds of businesses are working to address specific needs. There are so many people working to improve the remote learning experience for special needs kids, but for this story, we focused on tools, platforms and games that can supplement educational curriculums (as opposed to all-encompassing learning systems).
Virtual nonverbal communication
Among the students with the greatest virtual learning impediments are those who are nonverbal or minimally verbal. The way that many of these students are being trained to communicate is through Alternative Augmentative Communication (AAC), which speech pathologist Lois Brady says can range from the hi-tech speech generator Stephen Hawking used, to simple drawings with pen and paper, which are much easier to both teach and learn in-person. “There is a lack of alternative augmentative communication (AAC) tools designed for distance learning.” Brady says.
Fortunately, Brady’s company iTherapy recently received a grant from Epic Games’ 3D Unreal Engine to design interactive tools that enable people to communicate in real time using language and speech-generating devices. “My vision is to have an AAC system that is live, so both student and teacher can use it at the same time,” Brady says. “The student will be prompted by the teacher remotely, who can model how to respond, request, reject and comment. And I plan to use avatars to deliver the messages, with context to where the voice is coming from and how to say the words — providing a speech model for those who may be able to gain verbal language.”
Another tech tool that Rob Gorski has found particularly helpful for his oldest son Gavin is Goally, a wearable device that parents can program ahead of time. Goally gives activity prompts throughout the day, aiming to help people with special needs to be more self-sufficient, while parents can step away from micromanaging their schedules. The device gives points for completing tasks, which are added up for rewards like a trip to McDonald’s or an episode of their favorite TV show.
Another new tool that works along similar lines is a free app called Kred Rewards, created by special needs teacher and former tech executive Nidhi Patel. “As students with special needs are at home, their parents need to be able to provide the self-reliance and self-management skills that their teachers work to develop during the school day,” Patel says. “Kred Rewards positively motivates kids to build skills while being rewarded with a weekly allowance based on their skill-development, and access to a cool rewards store. Skills can be academic, social/emotional, home or developmental. But building self-management skills — being able to set your own goal and track it to completion — is one of the key goals we have with students with special needs, and especially children on the spectrum.”
Dyslexia and reading assistance
Benetech is a nonprofit that bills itself as making “software for social good.” It offers a number of free online platforms for children with special needs, including a federally funded e-book library called Bookshare. Over 900,000 books are offered in audio, braille, large font and more — so kids with dyslexia, blindness and cerebral palsy can read on any device at their disposal.
Varsity Tutors is offering a number of online small groups, including Orton-Gillingham reading groups for students with Dyslexia. “An advantage of the online platform is that we can group students from across the entire US by level, not just grade,” a publicist for the company says. “So a small group of students can be working together on reading skills. It would be difficult for a family to find eight students all at the same level who all live in the same area. With our self-assessment, families automatically get grouped by level. And when kids work with other kids who have the same challenges, they don’t feel as isolated and alone in their quest to overcome their reading challenges.”
Creativity and inspiration
Learning games from the company Osmo can be a great way to unplug from virtual sessions. Texas-based mom Shandi Dews has a 13-year-old son with autism, and she says he’s been getting a lot out of Osmo’s Creative Starter Kit. “Having a child with special needs comes with its own set of rules,” Dews says. “For my son, it means learning is tactile and hands-on. The Osmo Creative Starter Kit encourages drawing, creativity and problem solving and allows him to build on that by taking what is present in his real world, and using it to interact in the virtual world — a world he really loves. I have never seen him so excited to see his drawings come to life. It is no longer just pen to paper, it is interactive, and with a child with autism that is what is needed.”
If your child loves to watch videos, Ever Widening Circles could be the key to taking virtual content into the real world. EWCed is a program started by Leisl Ulrich, a Harvard graduate and Clarkson MBA Innovation Fellow, and their publicist says they’ve had notable early success among students with autism and brain injuries. The program “pairs engaging video content with thought-provoking activities meant to stimulate real discussions and opportunities for further inquiry and creativity. EWCed is designed to fit into pre-existing lesson plans to enhance the relevance of ordinary schoolwork.”
Sometimes, at the end of a long day of distance learning — or at the beginning, or somewhere in the middle — you just need a hug! That’s the general idea of Huggaroo, a company that sells sensory products like weighted blankets, heating pads and kids’ compression sheets that Gorski says have been remarkably effective at calming his son Emmett. “A lot of autistic kids have sensory issues,” Gorski says. “Emmett hasn’t slept in his own bed in a year, but since we put these sheets on his bed three weeks ago, I’d say he’s slept there 98 percent of the time. He gets under the sheet and it sort of looks like he’s vacuum-sealed to the mattress. So he can just kick and punch and do whatever he needs to do and the sheet just pulls him back in. He says it makes him feel safe.”