Back to School? - Joubert Syndrome & Related Disorders Foundation
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children wearing masks at a school with teacher checking temperature

By Melissa Fields

Let’s face it: COVID-19 has changed life as we know it.  Our world changed abruptly last spring when the pandemic inched its way into our communities, slowly taking away things and activities that we previously took for granted.  Phrases such as “social distancing” and “flattening the curve” have invaded our daily conversations. We wear masks to keep ourselves and our loved ones safe.  We have all learned more about PPE and positivity rates than we ever wanted to know.

The most recent debate happening across the country is how to provide our children their much-needed, much-deserved education.  In Indiana, schools are offering some combination of in-person, hybrid scheduling and virtual or eLearning options.  While our kids typically start school the beginning of August, some districts have pushed start dates until after Labor Day.  Some have opted for virtual learning only until mid-October.  As soon as you think you know what is happening with your child’s school, something changes – because this pandemic is changing on a daily, sometimes hourly basis.

As a nurse practitioner in a school-based clinic, I have seen firsthand the preparations that are underway in hopes to return to the classroom in some capacity.  Guidelines are in place for transportation, disinfecting, contact tracing, and monitoring for symptoms of COVID-19.  Professionally, I worry about how I will take care of the kids that stop by the clinic for boo-boos and daily meds while vigilantly watching and assessing those that come in with a cough or fever.  I have read countless articles, news stories, and Facebook posts from people who have the same concerns that I do:  Is it really safe to send my children back to school?

The American Academy of Pediatrics issued a guidance statement in June.  Their COVID-19 Planning Considerations: Guidance for School Re-entry document “stresses the fundamental role of schools in providing academic instruction, social and emotional skills, safety, nutrition, physical activity, and mental health therapy.”  As parents of children with special needs, we know this all too well.  For our kids, school is the site of physical, occupational and speech therapy.  For our kids, school is where they learn social skills and how to interact with peers.  And let’s face it; we ‘parents’ need that sanity break while they are at school.  Our kids need to be in school because we are parents of children with special needs, not teachers trying to educate and follow IEPs from our living rooms.

The next part of this statement made me stop and think: “Schools are critical to addressing racial and social inequity. School closure and virtual educational modalities have had a differential impact at both the individual and population level for diverse racial, ethnic, and vulnerable groups, according to the guidance. Evidence from spring 2020 school closures points to negative impacts on learning. Children and adolescents also have been placed at higher risk of morbidity and mortality from physical or sexual abuse, substance use, anxiety, depression, and suicidal ideation.”  Wow, that’s a lot of factors to consider.

The AAP strongly advocates that all policy considerations for the coming school year should start with a goal of having students physically present in school,” according to the guidance.  Their statement goes on to provide guidance to parents and schools about how to best return our students to school as safely as possible.  You can read more about their recommendations here:  AAP interim guidance on school re-entry.

The opposite side of in-person learning comes from a real fear and anxiety about the virus.  Notice I said real. There is a scary side of this pandemic that should make us pause and consider what is best for our families.  Some children with JS have preexisting health conditions that put them in a “high risk” category.  Some children with JS have sensory issues that make mask-wearing nearly impossible.  Some children with JS have visual challenges that limit their ability for virtual learning.  As special needs parents, we are worried about an unaffected sibling bringing germs home.  We can’t imagine how our child’s IEP and the therapies that are received at school will be provided if our child is unable to be in the school building.  We are trying to figure out how to work, raise tiny humans with special needs, and earn our honorary teaching degree.

This virus is also changing.  Researchers and the medical community are learning more about the virus every day.  Scientists are working at warp speed on a vaccine that will undoubtedly create more questions in the coming months and years.  Even though we understand the benefits of in-person education, we know that there are always exceptions.  Even though we worry about sending our precious little people to school, we know that the risks sometimes outweigh the benefits.

Being a parent of a child with JS and another child with complicated medical needs, I too have lost sleep over what method of education will be best for our family.  In the end, this is a super personal decision.  And while I consider myself fortunate to be well-informed and well-educated on the pandemic, I don’t think there is a perfect solution.   The only right decision is the one that I make with the information that I have today.  The only right decision for your family is the one that you make with the information that you have today.  My kids, my decision.  Your kids, your decision.  What is right for me and my family may be completely different than what is right for your family.

So, ask questions.  Have real conversations with your kids, their teachers, their therapists, and their school administrators.  Talk to your child’s medical team about any health concerns that you may have.  Gather your information and make a list of pros and cons.

My big hope is that our JS family can continue to find support and compassion from each other as this crazy pandemic continues.  We can listen to each other’s questions and concerns.  We can send virtual hugs, a pat on the back and much need prayers.  As always, we have strength in numbers. We will get through this together.