Learning to live with pediatric MS is not easy for your child; it’s not easy for you. One of the most difficult parts of living with MS for a child may be a lack of understanding from friends and teachers about hidden symptoms.
As we discussed last week in Pediatric MS: Resources for Kids, Teens, and Parents, one young MS patient wrote a booklet to explain MS to her friends. I also highly recommend Elaine’s booklet for teachers who may have a student with MS in their classroom.
An excellent resource for teachers and administrators would be Students with MS and the Academic Setting: A Handbook for School Personnel, a booklet created by the National MS Society. It is important that school personnel - teachers, nurses, administrators, bus drivers, etc, - become aware of the ways pediatric MS may affect your child at school.
Academic accommodations or modifications may be necessary to minimize the effect MS may have on the student’s learning and academic performance. Although it is easier to respond to symptoms which are easy to see and understand (e.g., walking difficulties, balance problems, or tremor) than less obvious symptoms like fatigue and cognitive changes, all symptoms are equally important to recognize.
Specific physical and emotional stressors which students with MS may experience in school include:
Bladder or bowel symptoms which require frequent, urgent trips to the bathroom
Difficulty taking the stairs due to weakness, fatigue or poor balance
Change in academic placement due to cognitive changes
Visual changes which come and go and interfere with classroom functioning
Inconsistent level of empathy and support from school staff
MS is unpredictable, so understanding its symptoms is key to providing an appropriate 504 or Individualized Education Plan (IEP). Since a variety of MS symptoms can negatively effect your child’s ability to learn, he/she may qualify for Other Health Impaired (OHI) special education services. Check with your school administration to see if this is an appropriate approach for your child.
Symptoms can vary over time, so accommodations may have to vary as well. The student’s situation may change by the day, week, or month, which is why it’s important to have a plan in place. For an extensive list of sample accommodations, consult the school personnel handbook (pp12-18).
The following are examples of accommodations which may be combined to address various symptoms and MS-related challenges. This plan is not extensively but shows that there is often more than one way to approach various challenges.
Weakness in legs: Top locker access; Extended time to get to class; Frequent rest breaks; Elevator access
Fatigue: Extra set of books at home; Extended time on tests and assignments; Frequent rest breaks; Elevator access; Flexible class schedule based on best time for student; Shortened assignments; Difficult classes distributed evenly throughout the day; More frequent quizzes rather than longer exams
Low vision: Enlarged print books; E-books; Seating near the board; Outline or copy of teacher’s notes; Reading test items to student
Motor difficulties: Oral responses; No grading of handwriting; Allow for the use of adaptive technology and technology (such as a pencil grip or computer with adaptive software); Provide a copy of teacher’s notes; PT/OT evaluation, consultation and services
Slowed cognitive processing: Extended time for tests, quizzes, assignments; Allow student to tape record assignments and homework; Provide copy of notes before class
Heat Intolerance: Allow student to carry water bottle; Allow a fan in the classroom near student’s seat; Provide indoor exercise options; Allow student to wear a cooling device
Sensitivity to cold: Store extra sweater or jacket in classroom** Bowel/bladder weakness:** Allow unrestricted bathroom access; Keep change of clothes at school; Sit student near door for easy access to restroom
Verbal fluency difficulties: Allow for written responses; Provide extended time to respond
Depression: Time with school counselor or referral to outside mental health professional emotional difficulties** Information retrieval difficulties:** Multiple choice quizzes and exams; Open book quizzes and exams; Provide cues to help retrieve information; Allow visual cues
Attention/concentration problems: Cues to stay on task; Seating near teacher/board; Creating class agenda and course outline; Simplifying instructions; Provide coaching and counseling
Next week we will discuss the transition to living with MS in college.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.