Top Two Challenges Teachers Face With Students Who Have PANDAS/PANS
Children who have PANDAS/PANS and their families face many challenges, one of which is determining how children with these conditions can continue to function at school. The classroom can be a stressful place for a child with PANDAS, and their newfound symptoms can cause them to struggle in ways they never have before or experience intense anxiety and emotions that interfere with their ability to learn.
To understand the ways we can better support the teachers educating our children, we talked to Dr. Patricia Doran, a professor of special education at Towson University. She has been teaching at the university for 11 years and has authored two books on supporting children with PANDAS and their families: A Parent’s Guide to PANDAS, PANS and Related Conditions: Information, Support and Advice and PANDAS and PANS in School Settings: A Handbook for Educators.
Dr. Doran, who has children of her own, became interested in learning more about these conditions when several people she was close to had children who were diagnosed with PANDAS. Today she continues to research the disorder and spread awareness about how educators and school professionals can best support the PANDAS community, especially in classroom settings.
How does PANDAS affect children in the classroom?
Some common PANDAS symptoms that can impact a child’s ability to function in the classroom include:
- Anxiety, including separation anxiety from familiar people or places
- Tics that can look like fidgeting or hyperactivity
- Obsessions and compulsions, which may include unexplained fears or the inability to tolerate certain activities
- Reduced ability to focus
- Changes in behavior or personality (a previously “well-behaved” student may suddenly become disruptive)
These sudden behavior and personality changes can be confusing and challenging to manage, for both the child and their parents. Often the conversation surrounding PANDAS in school environments is aimed at helping parents communicate with teachers and administrators in order to advocate for their child. Since PANDAS is not always known or well-understood, parents often have to first explain the condition before even broaching the topic of getting accommodations for their child.
However, it is important to include educators in this conversation as well. They interact for hours every day with students and can be instrumental in helping children with PANDAS succeed in school.
Addressing PANDAS in the Classroom: Behavioral Challenges and Accommodations
Dr. Doran notes two major challenges for teachers when handling PANDAS at school: day-to-day accommodations in the classroom, and the fact that many teachers are conditioned to look at challenging behavior as a moral failing on the part of the child.
Addressing the first challenge requires having up-to-date information on the child’s symptoms and progress in their treatment plan. In order for a teacher to be able to support a student with PANDAS on a daily basis, they need clear, specific details about the child’s symptoms and behavior. In most cases, the teacher is relying on the parent to provide this information, which requires a lot of trust. For example, it may be productive to request input from your child’s therapist on a school-based behavior plan. Sharing personal updates on your child’s medical and mental health, even with a professional educator, can be scary. Plus, it’s time-consuming.
“The reality is that parents don’t always have the resources to put people in touch with each other or to facilitate that [communication] in terms of time and logistics and money,” Dr. Doran says. “So I think for teachers, making those adjustments, often on very little prep time and with sometimes limited information, can be really challenging.”
Not getting relevant updates on a child’s condition creates obstacles for educators trying to create a productive learning environment. However, even if a teacher is informed of your child’s unique PANDAS symptoms, it can be hard to modify thinking rooted in the choice-based behavior model that is typically used within the education system. The logic behind this model is that if a child misbehaves, it must be because they are making an active choice to do so. If the child is choosing to disrupt the class, then a consequence should follow; for example, if the child doesn’t stay in their seat, they won’t get to go to recess. Of course, this choice-based behavioral system doesn’t work for children with neurological difficulties or conditions like PANDAS because their “misbehavior” is not intentional. A child with tics constantly getting out of their seat might seem hyperactive and purposely disruptive, but educators need to understand that the tics are one of many symptoms and not a purposeful choice.
“I often ask teachers to take whatever their behavioral system is and imagine that you are implementing those behavioral consequences for a child having a seizure. That’s kind of a striking example and it’s a little bit off-putting, but I think for teachers it helps to think about,” says Dr. Doran.
She explains that this challenge is rooted in the ways we’re conditioned to see certain behaviors as voluntary or involuntary. “As a culture, we have really clear boundaries. We know that if you have a seizure, that is not in your control. But in reality, a lot of times if you’re a child who has PANDAS and are having a panic attack, that is not in your control either. We’re very comfortable [addressing the seizure in a non-punitive way], but we’re not at all comfortable doing it with the [panic attack] because it looks like problematic, challenging behavior. Getting beyond our perceptions about behavior is often a big learning curve for teachers.”
Strategies for Educators
So how can teachers overcome these challenges? And how can parents help? According to Dr. Doran, two of the most helpful strategies are flexibility and communication.
It is important for teachers to recognize that with PANDAS, a child’s behavior can change from one day to the next. Pivoting so quickly is difficult, but if a teacher is at least aware of the nature of PANDAS symptoms, they can be prepared to be as flexible as possible. Additionally, teachers should seek out parents’ input and really listen to them. Believe them when they share about what their child is going through.
“It is so impactful when educators reach out proactively,” Dr. Doran says. Sometimes this may simply involve reaching out to parents who mentioned PANDAS on a get-to-know-you form, or even reaching out to the whole class at the beginning of the school year to see if parents want to share anything about their child’s needs in the classroom. This creates a more trusting environment in which parents can feel comfortable sharing personal information about their child, because they know the teacher will validate that information and do their best to work with their child’s unique needs.
It’s also important to remember that teachers and parents are not the only parties involved in arranging for accommodations. Teachers should also lean on their school administrators for help when necessary. Remember that as an educator you are not responsible for everything needed to address one child’s PANDAS diagnosis. Collaboration is key in these scenarios.
“You should not have to be the one sitting there researching what occupational therapy supports are best for a student,” Dr. Doran says. “Your school or your district should be able to point you toward an OT who can help you get that information. It has to be a collaborative process, and I think it’s okay for teachers to lean into that.”
Finally, Dr. Doran emphasizes that educators want parents to know they really do have your child’s best interests at heart. “A school administrator who I was speaking with recently gave me a great quote to live by, which is, ‘People usually want to do the right thing, they just need to know how,’” she says. “I think this is one of those cases on all sides where the more people communicate, the more everyone will be able to figure out how to [best help] a child.”
The PANDAS Network’s Education Toolkit is another great resource that helps parents communicate with teachers and school personnel about PANDAS and provides advice and strategies for educators who want to support children with PANDAS in their classroom.