With all the changes in schooling happening this year, you may be wondering if it's time for your kid with MS to go remote full-time—regardless of what happens with the pandemic. For some kids with this condition, the flexibility that online learning provides can be a real game-changer now (and later when schools resume in-person full-time). But for others, it's a much tougher call.
There are definite advantages to this approach for some students with MS, whether it's nixing a commute, eliminating the rigors of physically navigating the school day, or being better able to manage the heat issues, hearing difficulties, and nerve pain that often plagues kids with this condition. Then there’s the flexibility of being able to make all those doctor’s appointments without having to repeatedly make special arrangements with the school’s front office. Still, pediatric MS, which according to the National Multiple Sclerosis Society affects around 5,000 kids in the U.S., can hinder a child’s ability to learn and fully engage in class, sports, and social activities. So does more screen time, coupled with less direct teacher and peer interaction, make things better for an MS kid—or worse?
That’s the million-dollar question. “Online learning has a significant upside in that students can work at their own pace, which is important for those that have cognitive issues caused by brain inflammation. But at the same time, school is more than academics. Being online is isolating, which can be challenging for students with MS, who can be prone to depression,” says Mary Rensel, M.D., director of Pediatric Multiple Sclerosis and Wellness at the Cleveland Clinic’s Mellen Center for Multiple Sclerosis in Ohio.
While the majority of kids who are diagnosed with pediatric MS are 13 or older, some are still in elementary school—and the success rates of online learning can be age-dependent. “Younger children have a harder time with their concentration and attention for this mode of learning. In general, older teens with MS and young adults can adjust to online learning as effectively as most others,” says Lauren Krupp, M.D., neurologist and director of the Multiple Sclerosis Comprehensive Care Center at NYU Langone Health in New York City.
For some older students with MS, the benefits add up.
Online learning has worked well for Hannah Schnitzler, 18. She was diagnosed with pediatric MS in 2018 when she was a sophomore in high school. After several hospital visits during her junior year she switched from regular classes at her public school to fully online, private learning via a charter school. For her, the experience was an A+.
“Studying online gave me freedom and relieved pressure. I was able to wake up at the time I wanted and still get my work done,” says Schnitzler, who hails from Quakertown, PA, and at times battles fatigue, cognitive issues, and weakness throughout her body. Having the ability to work at her own pace, she adds, especially when she wasn’t feeling 100%, was a grade-saver.
For her senior year, she returned part-time to her regular school and adopted a hybrid approach, taking core classes online and electives in person. Now a freshman at DeSales University in Center Valley, PA, she’s studying psychology both online and in-person, plus working part-time, too. The flexibility of remote learning makes it possible for her to achieve her goals. “If I’m feeling fatigued, it effects my stride,” she says. “But if I can’t finish, I’ve learned to prioritize and give myself a break if needed.”
Schnitzler isn’t alone. Many middle and high school students—already masters at technology—find that online learning is ideally suited for them, unlike younger students who may become unmoored by computer glitches or bad wifi, or become easily distracted. Regular teenage fatigue, which comes from shifting circadian rhythms at this age, can be exacerbated by MS, so being able to nap as needed can be a godsend. As is not having to travel to and from campus, especially on hot days. People with MS often experience heat intolerance, with symptoms worsening because elevated temperatures can further impair already-damaged nerves from properly conducting electrical impulses, according to MS Trust.
“Eliminating a commute helps fatigue. Students can avoid hot weather waiting for a bus, and they don’t have to walk long distances, whether from a bus or car, or to school and around hallways,” says Julie Fiol, an RN and director of MS Information for the National MS Society in Waltham, MA.
Another benefit is that students have volume control and can re-watch video lessons, as needed. “If there are hearing difficulties, this can be very helpful. From a mental health standpoint, students may also feel less anxious being in their own space and comfort of their own home,” says Sean Paul, M.D., a child psychologist with NowPsych in Sarasota, FL.
But younger students with this condition may struggle with a remote approach.
Concentration can be an issue for anyone with MS, and young kids in particular can be distracted. “It’s a lot to expect a younger MS child to sit before a computer for several hours and maintain attention. They can’t sit like a deer in the headlights watching the computer,” says Patricia Klass, Ph.D., a neuropsychologist that works with children and teens at the Cleveland Clinic.
The K-5 crowd may also have more difficulty following directions online, get frustrated with technology snafus, and may not have the maturity to be organized. “Studying online requires organization and skills in planning, which may be an issue for some younger MS patients,” says Yolanda Smith Wheeler, Ph.D., CRNP, assistant professor of Family, Community and Health Systems at The University of Alabama at Birmingham.
Those with cognitive and visual challenges may also be hindered by computer-based learning.
No matter the age, online learning can present special challenges for students who struggle with visual disturbances (including optic neuritis, a painful, inflammatory condition of the optic nerve that is common in MS), cognition trouble, and memory problems.
Jeffrey Kane, M.D., a pediatric neurologist at Child Neurology Consultants of Austin, TX, has concerns. “I worry that kids with mild cognitive effects from their disease might fall through the cracks and not be detected when their only interaction with their teachers is online.”
The road can be tough for those with pediatric MS who have impaired processing speed, too, adds Dr. Rensel. “There can be a lot of distraction with 20 students on a Zoom call,” she says.
Dr. Rensel believes it’s important to get a formal neuropsychological assessment before going with the remote approach. “We recommend that any child with MS have this done with a professional to get a clue about your kid’s needs, strengths, and weaknesses. Do they need cognitive rehab to enhance cognition and learning ability?” Don’t rely solely on the school’s evaluations, she advises, because they typically don’t examine specific cognitive functions like long-term memory and cognitive flexibility.
Take Owen Hawley, who was diagnosed with MS at 7. When the pandemic shut down his school in March, the now 13-year-old didn’t transition smoothly to online learning. “It felt weird not being with my friends,” he admits. “Teachers used Google Meet, which wasn’t ideal. I needed extra help and fell behind.”
His mother Marissa says Owen is a slow learner, who had an Individualized Education Plan in place and was used to being able to take advantage of study hall and a special resource room at school. “Sometimes he would need help with reading, or to have someone spend the time to explain things to him in a different way, which he didn’t have the luxury of once school closed.”
This year, students at his school can choose to be completely online, or attend three days online and two days at school. Marissa has hired a tutor to help as she and her husband both work full-time and have two other boys, ages 10 and four. For the reopening—happening now at schools all over the country (with many different models being tried)—she’s hoping for the best. “Schools have had time to prepare. I hope things will be different. Owen needs more individual time with his teachers.”
Social isolation can be a real issue for remote learners—here’s how to beat it.
Depression is a common symptom of MS, and social isolation can compound matters. “The biggest problem that all kids seem to have is social isolation. They miss seeing their friends. That is especially true of teenagers, and most kids with MS are teens,” says Dr. Kane.
The remedy for that is to make sure your child has a life offline, be it volunteering, participating in community clubs, joining activities at houses of worship, or any number of other opportunities.
Schnitzler admits that when she was fully online, at times she felt emotionally remote, too. She countered that by maximizing her weekends: attending her high school’s football games on Friday nights, grabbing dinner with friends, and doing sleep-overs.
Sports and fitness can offer connection, too. Finding outlets for fitness is even more important with online learning than in-person classes, says Eliza Nimmich, co-founder and COO of Tutor the People, an online and in-person tutoring and test-preparation company. While at a traditional school, students get P.E. classes and even the opportunity just to walk to each class. But online learning tends to keep children in front of a screen for the majority of the day. This makes finding physical outlets crucial to keeping your child healthy, and MS children are no exception, Nimmich adds. Research shows that structured physical activity, from light exercise (like taking a daily walk) to a more intense cardiovascular work-out (running, lifting weights), actually improves MS symptoms while reducing risk of relapse, and helps decrease symptoms of depression and anxiety in all children. She recommends speaking to your doctor before starting any new physical activity.
When things return to normal, check out community-based sports leagues to play soccer, lacrosse, among others. Good old-fashioned fun is essential. “Children and teens rely on peers for support. If they’re not learning side-by-side, be sure your child finds way to spend time with friends,” says Fiol. Check both social and fitness boxes at once by encouraging your kids to meet up with friends for socially safe neighborhood walks or a fun tennis match at the park. For home-based fitness, look to YouTube for online yoga and other exercise classes, many of them free.
Finances and family members must be considered before going remote.
Online schooling can impact the entire household. Ideally, you want to carve out a space solely for your child to study—and that may mean investing in a desk, lighting, and whatever else is needed to make your child comfortable and ready to learn. But there may be bigger costs, too, because for younger students one parent may need to stay home to oversee online classes and workload, which can put a serious dent in the family’s pocketbook. Think through these costs, in addition to what you’ll shell out for private instruction, whose annual tuition varies from state to state and school to school. The average? $11K+ per year.
If you do choose this option, here’s how to prep for success.
No doubt you like the thought of your child being able to learn online in the comfort of home and at their own pace, or doing so in combination with in-person classes. Dana Stahl, M.Ed., a learning specialist and educational consultant with Educational Alternatives in Katonah, NY, says there are a few questions you should ask yourself before going remote. “How much academic support will your child need? How much virtual support will you and your child need? Does your child require parental support to complete assignments? Are the courses designed on an individualized level? How are the social aspects of the program?”
The key to success? Get involved. “It’s always important for our patients with MS to work closely with their teachers and school nurses, and this still applies to online learning,” says Lydia Marcus, M.D., assistant professor, University of Alabama Pediatric Neurology in Birmingham. You may need to set up a meeting to discuss an IEP (Individualized Education Plan, like Owen’s mother did) and have your health care provider (MD or NP) attend the meeting to ensure your child’s MS needs are met, she says.
Connect regularly with your child’s teachers. “They need to know what is working and what is not,” says Stahl. Request class notes and outlines to assure that your children have the information being presented. Ask for weekly planners that break assignments down into small tasks, which is more manageable for kids with MS. Speak up when you observe your child needs help.
In addition, Stahl suggest parents:
- Create a designated learning space in a quiet area of your home. Remove potential distractions. Explain that when they are in this space it is time to work. Try to prevent your child from using this space as a play area.
- Put aside personal digital devices for kids who have their own phones. “Consider creating an agreed upon place where your child’s phone has to be during class hours,” says Stahl.
- Establish routines, so your student wakes up at a consistent time, gets dressed, and eats breakfast before class. This will help them create a headspace in which they are ready to actively participate in school.
- Set goals, like finishing homework by a certain time, or carving out a specific time to study. Discuss goals for the day, week, and month to help keep your child stay on track. You can even create a reward system for certain grades or test scores to motivate your child.
Where do you begin if you do want to pursue private online learning?
Start by calling the nearest pediatric MS Center and talking to your doctor or pediatric nurse who’s familiar with your child’s strengths and weaknesses. If you belong to an MS support groups, poll other parents. “The best resources for finding private online learning are other like-minded parents,” says Lindsey Wander, CEO and founder of WorldWise Tutoring in Chicago.
When deciding on a program, look for those that align with specific learning goals for your child. For instance, Wander says, if your main goal is for your child to attain high grades, seek an organization that guarantees elevated marks. Whereas, if you primarily want your child to be engaged and motivated, find a program that works on underlying learning and life skills. Always check out the school’s policies and procedures for students with special needs.
In addition to private offerings, there are (free) public schools in many states that are designed to be virtual. You can find some on the database compiled by Eric Endlich, an independent education consultant.
A proven track record also matters. You want schools that have been working with children and their families for years. Stahl says to look for a well-rounded program, its success rate, and the instructors’ credentials for starters. “Pay attention to the features of each program. How many students do they have? Do they offer private and/or group lessons? If it’s group only, how big are class sizes? Do they offer a trial period or a money-back guarantee? Do they provide the required study materials and/or software?”
Schnitzler, now a busy college student, offers this advice for her younger peers, and parents, too, who want to go remote: “It’s important to stay organized. Get a planner so you can be clear on what you need to do, when. That helped me a lot. If you’re struggling with your work, let your parents and teacher know.”
Online learning is by no means a panacea—some kids with MS give this approach high marks, while others report it was a failure. Only you can answer the question of whether it’s right for you and your family. We’ll leave the final grade to you.