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:
Symptoms of dysautonomia may include: