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

• Depression or mood disorder

• Inconsistent level of empathy and support from school staff

• Isolation

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