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The only thing predictable about dysautonomia is that it is unpredictable.

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 educational plan will be necessary to the future well being of the child. Although schools and school districts may vary in the level of available health care assistance, federal law requires all public schools to provide chronically ill students with a “free and appropriate education in the least restrictive environment.” (Click here for 504 Educational Links.)

As soon as possible, parents should contact their particular school system and inquire about initiating a 504 Plan for their dysautonomia 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. DYNA offers a video: Goofy Slipper Lecture on Dysautonomia that will help your school system better understand dysautonomia.

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. Symptoms of dysautonomia can vary dramatically daily, hourly, and sometimes minute-by-minute.

Some patients with dysautonomia may be mildly affected with only occasional symptoms, while others can be significantly affected with constant and severe symptoms. Those with severe cases of dysautonomia can be virtually bedridden. Often symptoms can be so impacting that children can have difficulty completing school work, and they may require extra help just to keep up.

Some children with dysautonomia may need to be placed in a home teaching program for health impaired students 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). Other children may be able to attend school on a limited or part-time basis and some of those children may require a partial homebound tutor as well.

What dysautonomia children need most is understanding and encouragement to help them deal with these complex and debilitating 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.

Creating an individual educational plan for these students starts with two things:
1)    Flexibility
2)    Creativity

Symptoms of dysautonomia may include:

Orthostatic Intolerance
(dizziness or fainting in upright position)
Tachycardia
(fast heart rate)
Palpations
Chest Discomfort
Low Blood Pressure
Lightheadedness
Gastrointestinal Problems
Excessive Fatigue
Exercise Intolerance
Nausea
Visual Disturbances
Weakness
Shortness of Breath
Mood Swings
Anxiety
Vertigo
Migraines
Tremulousness
Noise/light sensitivity
Insomnia
Frequent Urination
Temperature Regulation Problems
Brain fog/forgetfulness
Inability to concentrate
Difficulty with recall
Appetite Disturbance
Hypersensitivity to sensory stimulation


Being unique, there is no one method of dealing with these students that will work for all. However, certain common factors prevail in approaching their education.


Considerations:
  • Open and supportive communication between parents, child, medical and educational authorities is absolutely essential. A common, respected understanding for the illness is the only way that a sound 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.
  • Recognize that dysautonomia students often 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.
  • "Brain fog" and forgetfulness are an often occurring problem with these children and may present a problem and a frustration for the student. Concentration may suffer due to lack of blood flow. Comprehension, deduction, and memory storage and retrieval may 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.
  • The illness produces frequent absences and the school system needs to understand this fact and allow for it in the planning process and not unfairly prejudice the student.
  • Being a homebound student with a documented medical condition does not mean that the student can not participate in school activities or have a social life. It is important for these students to remain connected.
  • When an educational plan involves more than one teacher, coordination between teachers is essential to avoid overloading the student.
  • Take into consideration that some students may have a low tolerance of laboratory smells and other substances.
  • In some cases noise and light sensitivity may pose a challenge.
  • Fluids are essential and should be allowed at all reasonable times.
  • Frequent salty snacks may be necessary.
  • 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.
  • A companion may be needed to help with book bags etc.
  • 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.
  • 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.
  • 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.
  • 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.
  • State and Standardized tests may be best issued at home and divided over a period of time in order to allow the student recuperation.
  • Routine classroom tests and exams present practical problems. Special testing concessions may need to be made, but should not be viewed as "favoritism.” Keeping the frequently absent or homebound student in contact with his/her school peers can be a tremendous help emotionally.
  • Exercise intolerance may require elimination of PE from the student's individual curriculum.
  • Avoid unnecessary exposure to viruses or germs. Consider sending the nurse to the student for administration of medication rather then 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. Student should avoid unnecessary germ exposure.
  • Rumors often surface among the other students regarding a student's medical condition. Generally, it is best to be open and to communicate/educate classmates about dysautonomia and about the impact this condition has on the student. Children have a great capacity for understanding when treated like adults and dealt with in a mature manner. This is especially important for a child that "appears" to be healthy, but has a chronic illness. Ostracism can happen quickly if the school officials or staff present an ill-informed, skeptical attitude. Be open, informative and communicate.
  • This illness was 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 this condition, many others are just starting to gain exposure to this illness. 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.
Dysautonomia children are truly special kids - not for their disabilities, but for their abilities!


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