Joshua Santiago is a typical 8-year-old who isn't into homework but is all about recess: Running around. Giggling with friends. Tag. All of it. The thing is, at times, both homework and recess can be a struggle. Joshua has multiple sclerosis, a chronic disease in which his immune system attacks the protective layer that covers his nerves, glitching the connection between his brain and the rest of his body. While MS in kids isn't common, it's not exactly rare among those who develop the condition: Up to 10% of all people diagnosed with MS are 16 or younger, according to a report in the journal BMC Neurology.
That means there are a fair number of kids like Josh in math class, PE, and in line for Friday pizza in the cafeteria who are dealing with a bit more than the typical kid and teen worries. If your child is among them, we've got some advice for helping them have the best school experience possible.
Keep the Classroom Cool
“For those with multiple sclerosis, overheating can bring on fatigue,” says Lydia Marcus, M.D., a pediatric neurologist at Children’s Hospital of Alabama in Birmingham. It can also cause other symptoms, like numbness or weakness in limbs, to temporarily flare. That means that sweaty, stuffy, no air-conditioned classrooms are brutal for kids with MS. Dr. Marcus recommends working with your child’s school to ensure the classroom temperature is just-right. “Kids should also have lots of access to water and have a cooling vest made available if needed,” she says. Joshua’s mom Delissa Santiago worked with her son’s school to loosen their strict tie-pants-button-down dress code, allowing Joshua to wear cotton t-shirts and basketball shorts to keep his temperature MS-friendly.
Sit in the Front
According to the National Multiple Sclerosis Society, bladder dysfunction occurs in at least 80% of those with MS. (The nerves that tell the brain that it’s time to use the bathroom don’t function correctly because that part of the central nervous system contains MS lesions or scarring.) Since frequent, urgent trips to the bathroom can be an issue, connect with your child’s school to make sure your kiddo gets unlimited access to the bathroom and is offered preferential class seating for a swift exit. The good news? These types of issues “often return to baseline—or close to it—once your child recovers from a relapse,” says Dr. Marcus.
Sitting closer to the front may also help alleviate some of the strain of blurry vision, which can occur due to an MS relapse and may impact a child’s reading, writing or attention in school. Proximity to the front, however, won’t help when it comes to a bout of double-vision. For that, special eyeglasses with prisms may prove useful, notes Dr. Marcus. Here, the prism bends light before it travels through the eye and, according to The American Academy of Ophthalmology, the light is then redirected so it falls correctly on the retina in each eye. The brain then fuses the two images to produce a single, clear picture.
Enjoy Gym Class!
It’s often assumed that kids with MS will want or need to sit out of PE or recess. But that’s often not the case. “The majority of kids with MS who are on high-efficacy treatment can manage just fine,” says Leigh Charvet, Ph.D., neuropsychologist and director of MS research at NYU Langone Health. “Moreover, we encourage exercise because of how critical it is for the overall health of someone living with MS.”
While it may seem counterintuitive, those with MS who regularly break a sweat improve endurance, decrease their overall fatigue and up the strength in their arms and legs. Joshua, for the most part, is right there with classmates participating in gym. “He runs around and plays just like all the other kids,” says Delissa. “But Joshua also can easily ask to be excused if he doesn’t feel up to doing physical stuff. He’s allowed to choose.” And if accommodations are needed, just ask.
Have a Go-To Person at School
“A lot of kids and teens with MS can fear that they’ll experience an attack—or onset of symptoms—in front of their peers. And that’s stressful,” says Charvet. Adding to the stress: Often, kids don’t share what they’re going through with many (or any) of their classmates.
Even if kids aren’t talking to their peers, “they need at least one person at school they can comfortably go to if an MS-related issues arises during the school day,” says Dr. Marcus. “While Joshua doesn’t talk about his MS with his classmates, at least he talks to his teachers,” says Delissa. “He definitely tells them if he's not feeling well.”
Manage the Midday Slump
“It can be difficult for kids and teens with MS to keep up their attention and their ability to focus at school during that after-lunch stretch,” says Dr. Marcus. While there’s not a ton one can do about the mental fatigue that goes hand-in-hand with living with a chronic illness, parents and kids can work with the school to possibly tweak what goes on midday, when fatigue often hits hard.
While the exact cause of fatigue in MS remains unknown, one theory is that those with MS are operating with an on-alert immune system, so it’s almost like your body is working to fight a phantom virus at all times. “It’s sometimes an option to tailor your child’s schedule so that the more demanding classes are in the morning,” says Dr. Marcus. “It’s worth discussing with the school, especially since doing so can make a world of difference academically and emotionally.”
Ask for More Time
Children and teens with MS might have cognition issues, making things like processing speed, memory, and fine-motor coordination more challenging. “And this can cause kids to worry about the perception that they don’t care about school, which adds to their stress level,” says Julia Lafauci, L.C.S.W., a social worker at the Multiple Sclerosis Comprehensive Care Center at NYU Langone Health in New York City. That’s why it’s imperative to work with the school to get accommodations whether informally or via a 504 or an Individual Education Plan. (The former is a plan for a child to receive accommodations in school that ensure academic success, while the latter focuses on specialized instruction and related services.)
For instance, “it’s very common that kids with MS may need longer times with tests because of their processing speed or fine motor problems,” says Dr. Marcus. “And have breaks within that longer timeframe, too.”
Get the Accommodations YOUR Child Needs
“An assumption I try to eliminate is that school notification and accommodations are always needed. They’re not,” says Charvet. But, of course, sometimes they are. Here are a few things to consider in order to make your kid’s school day more MS compatible:
- Get a second set of books: Keep these at home so no additional hauling is needed.
- Take movement breaks: Your student with MS may need time out of his seat to stretch to avoid spasms.
- Record lessons: This can help with recall and processing deficits and fine-motor fatigue.
- Request oral exams: When a teacher reads test questions and allows student to answer out loud, it’s less physically taxing than having to read and write out all of the answers.
- Make an early exit: Allowing kids to leave the classroom early to have extra time to get to next classroom can be important.
- Get elevator access: For the kid that uses a wheelchair, walking aid, or just needs to take it easy between classes.
- Top locker access: Kneeling or bending down to access bottom lockers can be tough on kids with leg weakness.
Do Homework Differently
MS can be exhausting. In fact, about 30% of children with MS complain of fatigue that’s significant enough to limit their daily activities. So, it stands to reason that “by the end of the school day, kids can feel wiped, both physically and cognitively,” says Dr. Marcus. When it comes to homework, it’s often best to not tackle it as soon as kids come home. “I have a patient who gets up early to do all her homework in the morning when she has more energy,” says Lafauci.
And while a lot of tweens and teens with MS crave that big fat afterschool nap, Dr. Marcus discourages it. “It’ll just make it harder for them to get good quality sleep at night, which is really important.” So instead, she suggests a quick 20-minute-tops nap before tackling homework or, better yet, clock some exercise once home from school. “It’s often the best thing to do,” she says. “It helps to reenergize kids and get them through homework and beyond.” Before diving into an exercise routine, however, consult with your physical therapists to determine which activities will work best for you.
“I always want to empower kids to do everything they’d normally do—with or without MS,” says Lafauci. “Just listen to your body, take a break when needed, figure out the most productive time for you and plan accordingly.” That’s what Delissa has been instilling in her son.
“Joshua is sometimes shy or scared to try everything that all the other kids do, but I always encourage him to,” she says. “While I don't think he fully understands what exactly MS is, he does know that it’s not going to hold him back.”
See more helpful articles:
10 Healthy Eating Tips for MS
7 Celebrities Living with Multiple Sclerosis
9 Proven Ways Exercise Can Help Manage MS