View our School Accommodations Checklist for Students with Dysautonomia/POTS
Section 504 of the Rehabilitation Act of 1973 requires school districts to provide a free and appropriate education for qualified students with disabilities. Children with dysautonomia often meet the requirements for a 504 plan, which provides protection from discrimination based on their medical disability. 504 plans are created separately for each individual child, and lay out all of the specific accommodations that child needs to be successful at school. This is a good option to formalize accommodations that your child is already receiving for protection as the child changes teachers or advances in grade. For more information about 504 plans, please visit http://www.ncld.org/students-disabilities/iep-504-plan/five-things-to-know-about-504-plan.
Educators and parents must work together to come up with creative ways to help ensure the student's success. Accommodations should always be individualized to the child's specific issues. Each person is unique, but here are some typical accommodations that have been used to help students with dysautonomia:
Issues related to fatigue
1. Frequent absences are to be expected with this condition, as symptoms can improve or worsen from day to day. The student should not be penalized for these absences.
2. Prioritize core academics. If a child does not have the energy for a full day, consider scheduling required classes together. Elective classes may be added once the student can tolerate a longer school day.
3. Consider half days beginning in the early afternoon. Many children with dysautonomia do not function well in the morning because that is when blood pressure is the lowest and symptoms are the worst. However, if you child feels better in the morning, and worse in the afternoon, then seek to arrange their schedule accordingly.
4. If the student is homebound or partially homebound, teachers should coordinate how much homework is given. Send priority work home frequently. Avoid overloading the student.
5. For extended absences, provide a tutor once a week to help with difficult material.
6. An extra set of books should be provided, so that the child can have a set at home. Lugging heavy books back and forth can exacerbate the severe fatigue of a child with dysautonomia.
7. Allow the child to participate in all school activities, even if they are generally homebound. Apprise the children of all school and after school activities. Sick children already feel isolated and participating in activities can make the transition back to school easier. Feeling connected is critical to their emotional and social development.
Minimizing the number of steps taken at school
8. Modification or elimination of physical education classes due to exercise intolerance. Many common exercises in physical education classes require standing, walking and running, which is problematic for most children with dysautonomia. Exercises that are better tolerated include gentle stretching while in the lying down or seated position, rowing machines, recumbent biking and swimming, as these exercises are less likely to trigger problems with cerebral blood flow and orthostatic intolerance.
9. Organize the school schedule so that classrooms are close together and the child's locker is in close proximity to all classes, if possible. If stairs are difficult for the student, try to have all of the classes on the first floor of the building, to avoid the need to walk up stairs.
10. Allow extra time in between classes to change rooms when long walks are required. The child should be allowed to leave a few minutes before the class is over to get to the next class without being penalized for tardiness. If the school is large or the student must travel from one building to another, a wheelchair or other means of transportation should be allowed.
11. Fire drills and evacuations may be problematic. An emergency plan should be worked out. The noise of the alarm may exacerbate their symptoms. Assigning an adult buddy to assist the child during evacuation or other emergencies may be necessary.
12. Provide an elevator pass, if relevant. Taking the stairs may not always be safe due to dizziness and fatigue. Assign a buddy or adult to accompany them in case of an emergency.
Concentration and maintaining academic performance
13. The curriculum should be adjusted according to the child's level of brain fog, a common symptom of dysautonomia. People with dysautonomia often experience cerebral hypoperfusion when they stand or sit upright. Cerebral hypoperfusion decreases concentration due to lack of proper blood flow to the brain, which can resulted in cognitive impairment (also known as "brain fog"). Comprehension, deduction, memory storage and retrieval are often impacted.
14. Preferential seating should be allowed. The child should be placed as close to the teacher and/or an exit, as possible. If the student has temperature sensitivity, as is common in individuals with dysautonomia, avoiding placement next to the heater or air conditioner may help.
15. Test taking may need to be modified. Children may need extended time, frequent breaks, the directions read and explained, and/or a scribe. Longer tests may need to be shortened, or broken into segments and taken over several periods of time. Tests should be administered in a quiet room where the student can better concentrate.
16. Note taking may be difficult or impossible for a child with dysautonomia. Possible accommodations are assigning a buddy to take notes and make copies for your child, bringing a tape recorder to class, or having the notes given to the child by the teacher. Allowing the student to use a laptop to take notes may benefit some children.
17. A calculator should be allowed for math computation in some cases. Math that involves sequencing or steps in a process is often problematic. Consider allowing the student to use a sample math problem as a reference.
18. Students who have severe brain fog may not be able to remember their locker combination. If possible, allow the student to have a name combination lock instead of a number combination. Choosing a word like their pet's name or their parent's initials will be far easier for them to remember than a number combination.
Symptom control during the school day
19. Allow the student to have hydrating fluids throughout the day. Children with dysautonomia do much better when they are well hydrated, and symptoms can be drastically worsened by even the slightest dehydration. Allow them to have a water bottle with them at all times. If they forget to bring their water bottle, allow them trips to the drinking fountain as needed.
20. Allow the child to have salty snacks throughout the day. Salt helps to retain fluids and helps keep up blood volume, helping to increase blood pressure. High intake of salt and fluids throughout the day are essential for almost all dysautonomia patients.
21. Frequent urination and gastrointestinal upset often occur in dysautonomia patients. Allow the child to have a permanent bathroom pass to prevent embarrassment and sit near the door to minimize disturbance in the classroom.
22. Accommodations may be needed for the lunch line, fire drills, outside recess, and other situations in which standing is typical. Assign the child a buddy to assist as needed, and allow the child to sit down or recline when he or she needs to do so. Remaining upright causes blood pooling in the lower extremities, which steals blood flow and oxygen from the heart and brain. This results in worsening of dizziness, fatigue, nausea, chest pain and other symptoms.
23. Allow students to position themselves as needed to prevent pooling. This includes elevating feet, sitting on knees, placing knees to chest, or sitting cross-legged. These are compensatory positions to help regulate better blood flow to the heart as well as prevent pooling in the legs. This should not be viewed as disrespectful behavior.
24. Frequent breaks should be allowed to improve circulation and prevent blood pooling. The child should be allowed to flex and stretch his legs, to walk around briefly, or to elevate his legs if needed.
25. Temperatures in the school may impact the child considerably, as children with dysautonomia may have problems controlling their body temperature. Heat will exacerbate their symptoms. Consider allowing them to carry a portable fan or scheduling their classes in rooms that have air conditioning. If your school requires a uniform, the child should be allowed to dress in layers and remove outer layers if they are too warm (blazer, sweater, tie, etc.). Similarly, the child may have a hard time staying warm in the cold, so allow extra layers and instead of a water bottle, the child should be allowed a sealed container of warm decaf tea or hot chocolate.
26. Students may have sudden flares of their symptoms, which can make it difficult to turn in assignments on time. Due dates for assignments should be flexible when needed.
Hypersensitivities
27. Students should be allowed to leave the classroom if they are hypersensitive to odors. Some children may experience headaches or vomiting in response to odors that are barely noticeable to the teacher. This can be particularly problematic in science labs and art classrooms. If this is a recurring problem, consider keeping the windows open in the classroom or increasing ventilation in the room when strong smells are likely to be present. Classroom personnel should avoid wearing strong perfumes and lotions, and ideally other students in the class can be asked to do the same - without pointing out the child who has the smell sensitivity.
28. Noise, light and vibration sensitivity may also cause an issue for children with dysautonomia. At times, wearing sunglasses or earplugs may be appropriate. If the bright light coming from a window is bothering the student, place the student in a seat out of the glare of the sunlight, and consider closing the blinds in the classroom or dimming the lights.
Other accommodations
29. A separate room, other than the nurse's office, should be set-aside for the child to rest when the student is symptomatic. When a child with dysautonomia gets a cold, flu or infection, it can turn into a more serious illness that sets them back academically, socially and physically. Adequate spaces might include the library, a teacher's office or an empty classroom.
30. Allow the student to carry a cell phone for emergencies. If there is concern that the child will use the phone during class, then the student can give the cell phone to the teacher at the start of class, and can retrieve it upon departure from the classroom.
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