There has been a lot of fear and uncertainty associated with the Covid-19 crisis, specifically for parents. An unknown virus hit the world, leaving many parents wondering how to best protect their children. Moms and dads across the community helped their children through an unexpected end to their school year and have taught them how to cope with a health pandemic that young minds can’t fully comprehend. Now that summer is approaching, parents are faced with even more uncertainty as summer camps and typically planned summer care are up in the air, not to mention processing the latest reports issued Education Departments with possible options of an alternate fall school session.
I am a mom to two elementary aged boys, so I get it. I have struggled to explain why they can’t hug their teachers goodbye or why they can’t visit with friends that they are so desperate to see. I too don’t know who will watch my boys this summer, given that my parents are categorized as more at-risk for the Coronavirus, meaning we haven’t seen them in months.
Being the Type-A, planner that I am, the uncertainty this crisis has brought me and my family is tough. But one day, while talking with a parent of one of my Puzzle Pieces’ clients, it hit me. This fear and uncertainty are feelings special needs parents face every day. This crisis has only magnified their worries, making my problems seem insignificant.
Special needs parents are hit with an unexpected diagnosis, for which there is no cure and is often rare or at least unknown to them. They are left wondering what quality of life their child will have and how many medical procedures will they face to accommodate their disability. A global health pandemic hits and children with special needs are among the most at-risk for contracting the novel virus. Medications, specialists, feeding and bathroom solutions and lifelong care are realities for special needs parents, making the novel Cornoavirus seem not as significant.
Special needs parents worry about the best educational route for their children. Will they fit into a mainstream classroom? Will they be accepted by their peers? Will their teacher see the special gifts they possess? How will my child cope with being away from me? What happens when they graduate and no longer have the structure they have become accustomed to? Non-traditional instruction (NTI) is particularly difficult for special needs parents whose children may be non-verbal or thrive in an academic setting with skilled teachers. At-home instruction for children with disabilities could mean regression academically or with skills that mean independence for the child. My stress of not being able to help with fourth grade math, relying on Alexa to verify my answer, doesn’t seem so difficult in comparison.
Special needs parents are faced with who will care for my child while I work. Their children, who require skilled care, cannot attend after school programs or a typical summer camp. They can’t hire a friend’s highschooler to babysit during the summer and even a grandparent may not be capable of meeting the needs of their child’s disability. Disability service providers like Puzzle Pieces (I know I reference Puzzle Pieces a lot, but its my passion, my organization, and my purpose) are often on waitlists because of such a high demand and some other providers often require a diagnosis before acceptance into their programs. Disabilities that require significant testing to evaluate deficits, such as autism, experience an average of a year in Kentucky to receive the needed assessments and diagnoses. And the wait time to receive state financial assistance for a diagnosis is currently over seven years. Suddenly, not having a plan for my children for one summer seems ridiculous.
I don’t point this out to bring on feelings of guilt or shame. That’s not my intention or what parents of children with special needs would want you to feel. More than anything, I hope that as parents, you can relate on a small scale to the moms, dads and caretakers I serve. I talk to these parents every day and took for granted that my current situation pales in comparison to the journey they are on. Covid-19 is serious and it has rightfully worried parents across the globe, but understand that the fear that it has brought is only amplified for special needs parents, who face worry and uncertainty every day with their child’s diagnosis.
Across multiple platforms we have heard “We Are All In This Together.” From commercials, speeches from leaders, and everyday citizens captioning their Instagram photos, that phrase is intended to connect us, equate each of our uncharted experiences. Personally, I have felt unity in the tagline #weareallinthistogether, but after reading today’s article I hope you understand that all of our journeys are different. Although we all may have fear and have experienced hardships, realize those are at varying degrees as mothers and fathers.