For information specifically about dysautonomia in the college setting, please see College Accommodations.
Education and the student with dysautonomia
The days, weeks and months following the diagnosis of a childhood dysautonomia condition are often a traumatic time for everyone involved. The initial shock of the diagnosis, the complex nature of the illness, the stressful medical appointments, the distressing hospitalizations, and the painful changes in the child’s and family’s lifestyle, all create tremendous heartache and agonizing stress for the entire family.
An illness such as dysautonomia is often without a definable beginning, middle or end. There is no quick “cure” for childhood dysautonomia conditions. Patients do not go into their physician’s office, obtain a prescription and walk out with a definitive treatment plan and a magic pill.
The process of learning to live with such a life impacting illness can be overwhelming and frustrating for everyone involved. Solutions are not pre-packed or one-size-fits-all. Educators will need to be patient, understanding, compassionate, and supportive in order to allow the student time to transition into the heartrending life adjustments of having an uncommon, invisible, chronic illness.
Teachers will play a critical role in helping these students ease more comfortably into their new existence and in allowing them to adjust, manage, and eventually thrive in spite of the numerous obstacles they face. Dysautonomia students are forced to suddenly reinvent their lives during their very vulnerable and impressionable years. Educators can help that process be emotionally healthy, medically successful, and educationally victorious.
Establishing a supportive plan
Establishing a supportive educational plan will be necessary. Although schools and school districts may vary in the level of available accommodations, federal law requires all public schools to provide chronically ill students with a free and appropriate education in the least restrictive environment.
As soon as possible, parents should contact their particular school system and inquire about initiating a 504 Educational Plan for their child. They should be prepared to provide official documentation of the diagnosis and they can expect that they will have to educate their school system about these unfamiliar conditions. Please be sure to refer to and utilize DYNA’s Informational Brochure created specifically for teachers: Educating the Dysautonomia Student.
DYNA also offers an Educational Series Video Lecture on Dysautonomia that will assist school systems and families with gaining a better understanding of dysautonomia conditions. A full staff viewing of this video will greatly aid in assisting the current student and will also spread awareness which likely will help future students with these conditions obtain a proper diagnosis and treatment sooner. (Since these conditions impact school age children awareness within the school system is highly important). Parents and/or school systems may order this video for presentation during 504 meetings, staff seminars, and private viewing.
Creating an individual educational plan for these students starts with two things:
Educating students with dysautonomia poses unique challenges for the parents, teachers, educational systems, and most importantly for the student. Dysautonomia conditions are very complex and involved. Each child is impacted differently and each case is unique and thus needs to be addressed individually. No two patients are the same. Symptoms of dysautonomia can also vary dramatically daily, hourly, and sometimes minute-by-minute (symptoms can literally change within a heartbeat).
Some patients with dysautonomia may be mildly affected with only occasional symptoms (thus needing few accommodations). Others can be significantly affected (severe cases will obviously require more educational accommodations). Symptoms can be so impacting that children may have difficulty completing school work, and they may require extra help just to keep up.
A home/hospital teaching program for health impaired students may be required for severe cases until they are strong enough to attend regular classes. The homebound situation may be short term or long term depending on the degree of impact and response to medical treatment. Moderate cases may be able to attend school (but may experience more frequent absences). Some cases may attend school on a limited or part-time basis (and thus may require a partial homebound tutor to fill in the gaps).
What dysautonomia children need most is understanding and encouragement to help them deal with these complex and poorly understood group of disorders. A cooperative approach that combines the efforts of the physicians, the patients, their families and educators is often the most important aspect of successful management of dysautonomia.
Open and supportive communication between parents, child, medical and educational authorities is absolutely essential. A common, respected understanding for the condition is the only way that a sound educational foundation can be established.
- Remember that children with an illness are still normal children. They also come from normal families. They are just dealing with very difficult and abnormal situations.
- Teachers and school staff should demonstrate flexibility in respecting the student's perspective in judging of their own capabilities. Teachers need to weigh their expertise in understanding the actions of "normal" students and then determine the tolerance needed for kids that "look normal" but have an invisible chronic illness that is not well understood.
- Emotionally healthy young people do not want to gain the reputation of being "the sickly kid" and thus do not want special attention payed to them in front of their classmates. Staff should show consideration for this and privately communicate with the student on how to handle informing classmates of their medical situation.
- Rumors often surface among the other students regarding a student's medical condition. Ostracism can happen quickly if the school officials or staff present an ill-informed, skeptical attitude.
- Recognize that some dysautonomia students have limited windows of opportunity when they are feeling well enough to complete school work. Prioritize instruction. Utilize the student’s limited energy on the essentials.
- Cognitive issues such as brain fog and forgetfulness can often pose a challenge for these students and may be quite frustrating for all involved. Concentration may suffer due to lack of blood flow. Comprehension, deduction, memory storage and retrieval may all be impacted. Curriculum may need to be adapted to meet the student's individual range. This is not too dissimilar to other children with special learning needs.
- Dysautonomia conditions often produce frequent absences and the school system needs to understand this fact and allow for absences in the planning process.
- When an educational plan involves more than one teacher, coordination between teachers is essential to avoid overloading the student.
- Dysautonomia conditions were not always taught in medical school or nursing school. While medical specialists in the field of dysautonomia are familiar with the varied and complex symptoms associated with the conditions, many others are just starting to gain exposure. It would be unproductive to expect school health officials to understand and interpret this complex condition. A patient approach —through open discussion with the student about his/her unique experience/condition and the distribution of appropriate literature — is the most effective way to increase awareness of dysautonomia and create a productive/comfortable environment for life and learning.
- Take into consideration that some students may have a low tolerance of laboratory smells, perfumes and other substances.
- In some cases noise and light sensitivity may pose a challenge.
- Classroom temperatures may dramatically impact the child. While the overall needs of the class are primary, recognition that a warm environment can compromise these students is needed.
- Bathroom privileges may need to be modified. We recommend a permanent hall pass be issued to the student.
- If available, an extra set of books should be provided to keep at home.
- Consider plans of action for fire drills, bomb threats, and lock downs. Plan for unexpected situations that the student’s health may pose significant obstacles and be prepared for such emergency situations. Have extra medication on hand, extra fluids, and salty snacks. Assign a staff member to be responsible for the student in a crisis.
- Allow the student to maintain possession of their own cell phone for emergency use.
- Fluids are essential and should be allowed at all reasonable times.
- Frequent salty snacks may be necessary
- Taking the stairs may not always be possible for the student. Consider passes for the elevator.
- Walking long distances to lockers may not always be possible. Utilize a locker in the vicinity of the student’s classes.
- Exercise intolerance may require elimination of PE from the student's individual curriculum.
- In severe situations, a companion may be needed to help with book bags, etc.
- Remaining upright may promote symptoms, therefore standing in line, fire drills, outside assemblies and other such events may require special accommodations so that the student is not standing upright too long or standing out in the heat for long periods.
- Sitting too long may also promote symptoms (due to lack of blood flow). Stretch breaks are helpful in order to promote blood circulation.
- Avoid unnecessary exposure to viruses or germs. Consider sending the nurse to the student for administration of medication rather than sending the student to the germ infected health room.
- Arrange for a quiet private area, such as the library, where the student can rest when symptomatic.
Testing & exams
- Concentration lowers blood pressure and thus these students should take breaks during long periods of concentration.
- Special testing concessions may need to be made. Extra time for testing is often recommended (this allows the student time to take bathroom breaks (obviously they will need to urinate more due to the amount of fluid they must drink), drink fluids, eat salty snacks (which will help with their blood volume), move around now and then to promote blood flow, regain their concentration etc.
- State and Standardized tests may be best issued at home and divided over a period of time in order to allow the student a period of recuperation.
- Being a homebound student with a documented medical condition does not mean that the student cannot participate in school activities or have a social life.
- It is important for these students to remain connected to their peers and school community. They should still attend school and community functions. They should still socialize with their friends on weekends etc. Just because they are homebound or partially homebound for their education - it does not mean that they can't have a social life! Encourage them to participate in school activities.
- Keeping the frequently absent or homebound student in contact with his/her school peers can be a tremendous help emotionally.
Symptoms of dysautonomia may include:
Dysautonomia children are truly special kids - not for their disabilities, but for their abilities!
~ Debra L. Dominelli, President, DYNA, Inc.