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PANDAS, PANS, Autoimmune, Disorder, Behavior, Sensory, OCD
Tics, Accommodations, Education, Autism, Neuropsychiatric

 

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Preview

 

From the fall of 2013 to the fall of 2015, I had the fortunate opportunity of being a Visiting Researcher Scholar at the University of California at Berkeley. My aim was to gather as much information as I could regarding the educational implications of the multifaceted condition I knew to be PANS. Toward these efforts, I interviewed parents, providers, educators, administrators, educational advocates, program specialists, PANS survivors, and others. This work is the result of what was gleaned during those interviews and research, where resulting information would, in the end, validate prior notions of pedagogy, and reshape others.


The intent of this book is to provide information to those who are the primary 'stake-holders' in the educational care and support of students with PANS. For this reason, the material is geared toward those in the educational field, but also to providers who seek information about the educational ramifications of PANS on their patients, and, of course, to families and loved ones who are seeking similar help for their child.


A few words about the organization of this book may be helpful. The sections, as well as the reference section and appendices, are developed to be relatively independent resources that one can refer to when needed. Citations and notes can be found at the end of each section. Bolded words will usually signify key terminology, such as that used in Education, Psychology, and Medicine. Finally, at the onset, I must freely confess to the probable overuse of italicized words, which are done in an attempt to signify concepts of special significance.


Section I provides a general overview of PANDAS, PITANDS, PANS, and the lesser known, CANS. Inherent in the discussion of these medical diagnoses is nothing short of a whirlwind medical history lesson, where parent demand, as well as devoted and caring providers and researchers, propelled  desperately needed research into PANS and its treatment. Section I details the mechanism by which PANS occurs, the areas of the brain that are affected, and the types of function that these areas of the brain are associated with.


Section II takes us to the Learning Environment. This is usually in the classroom. However, it can also be on the playground, at the beach or the state capital (if on a class field trip), or even at a Homecoming game, - anywhere that a student's same-aged curriculum is expected to occur. Whereas Section I introduces the reader to what we know about PANS' impact on behavior, attention, and learning skills, Section II describes what a careful observer might notice, in terms of how it can manifest in various 'classroom' settings. It also addresses the critical roles that Executive Functioning and Language play in the educational experience of students with PANS.


How might the school 'culture' and staff dynamics of a particular school and school district impact the recognition, formal identification, and delivery of educational services for students with PANS, and how can loved ones and providers effectively begin to move forward towards the appropriate educational program and treatment? More importantly, what is the academic 'big picture' here? Section III allows us to take a reflective pause before jumping directly into a plan of action. This section details how PANS is strikingly different from other disabling conditions that school districts tend to be familiar with. It lays the preplanning/groundwork down, which will be vital later on when considering what educational avenues would, and would not, serve to support these students' unique educational needs.


There is the realm of Medicine. There is the realm of Psychology. And there is the realm of Education. Each has their own culture, language, hierarchy, and related laws. As families and providers shift from the universe of physicians to that of psychiatrists and psychologists, and then to educators, a whole new framework that now includes the delivery of special services and education, comes in to view. Section IV provides us with an example of how one country's (US) legislative backdrop serves as a framework, in which all of its students can be supported, and their educational opportunities safeguarded. In understanding and recognizing the legal parameters of their country's educational mandate, individuals can begin to take realistic steps to ensure that their student is receiving the most appropriate education, at least within the agreed upon and expected codes of that nation's educational system.


Section V familiarizes the reader with the general processes of obtaining services, accommodations, and modifications to the student's educational day. What should parents reasonably expect to have happen at an educational planning meeting? Who are the 'cast of characters' expected to attend, and why is each important? As one begins to understand the How's, Who's, Where's, and When's of these educational processes, one can gain a better grasp at not only knowing what to expect during the meetings, but what to expect as appropriate in terms of delivery of services (or, when the actual help begins).


In Section VI, we finally come to review actual, specific recommendations for accommodations, testing considerations, compensatory strategies, and supportive services that can help our students succeed as much as possible during treatment, and as they heal. Of course, many students with PANS will share commonalities of educational needs related to the illness. However, each student will have unique needs, too, that will need to be addressed. For this reason, Section VI is designed to offer a continuum of suggested services and accommodations, rather than a boiler plate dictum where one-size-fits-all.


Section VII reviews some common themes that emerge as parents, schools, and local jurisdictions strive to serve students with special needs. What may be considered positive indications that the school is fostering and safeguarding the type of educational experience that will be most appropriate and least restrictive for this unique learner? This section includes aspects to consider when gauging the extent to which the needs of all students, but particularly those with PANS, are being addressed and met. It also suggests ways in which community and government agencies can play a greater role in addressing PANS.


Finally, resources and appendices are attached. Resources include a glossary of common terms and acronyms related to the field of Special Education and related services, a reference section, and a list of resources. Appendices include the Yale-NIMH PANS Scale, symptoms of OCD and tics, taken from the Yale-Brown Obsessive-Compulsive Scale (CY-BOCS) and the Yale Global Tic Severity Scale (YGTSS), respectively. Then, samples of the types of letters (that may be helpful when requesting assistance and services) are included, followed by examples of educational goals and objectives.


Lastly, it should be acknowledged that, while every effort has been made to address the special learning needs of young people with PANS, the unique needs of each student will require that families, schools, and supporting providers look to their own community expertise, applicable laws, and guidelines when deciding on educational treatment plans. Moreover, this book merely reflects a 'snapshot' in time. Laws may change, and certainly, our knowledge of PANS will evolve. In this spirit, it is hoped that this work will serve as a springboard, to spark new discussion and treatment options for this clearly, paradigm-changing group of learners.