It was a Friday morning in what has become the new normal. Breakfast was on the counter for my ten-year-old, who would soon wake and join his morning class meeting on Zoom. My thirteen-year-old, a child with a complex disability, was outside listening to music on his swing, trying to regulate enough to come in and start his day. I kept one eye on my oldest in the backyard through the window while trying to work at home from a makeshift office I’d assembled in the corner of the dining room. It was our second month of stay-at-home orders, and I was leading a team meeting from my kids’ Lego table while caring for my son with severe autism.
Like virtually every other working parent raising a child with a disability, within hours my world had been turned upside down by the COVID-19 crisis.
Parenting and Career
The global health emergency of 2020 brought to the national forefront an issue I have long struggled with personally: balancing parenting and career.
I am blessed to raise a sweet and unique child named Charlie. Charlie has enriched my life in every way, and he also has complex needs. With a range of diagnoses including a genetic disorder, intellectual disability, and severe autism, raising Charlie is a big job that requires a team of specialists and therapists. Because of his unique processing needs, we long ago understood and accepted that Charlie could only handle a shortened school day. He needs multiple therapies a week and medical management as well.
Before COVID-19 brought the issue to the headlines, a central theme in my life had been: how do you maintain your career while also raising your children, especially if your child has complex and diverse needs? As a full-time single parent, how could I work and also be Charlie’s mom? The answer to these complex challenges for me has been years in the making. I moved back to my hometown for many reasons, but foremost among them was the need for increased family support.
As the health crisis developed, I would have preferred to be able to fully social distance from my parents who are in the high-risk category for COVID-19 due to age. However, it soon became clear that wasn’t feasible, as the intensity of Charlie’s needs at times simply requires more than one person. Despite being on our state Medicaid waitlist for nine years, my child does not receive any respite services. For years I have paid for private care for my son in our home so that I can continue to work full time. This cost outweighs my mortgage, and is a financial challenge out of reach for many families. Despite the struggle, I realize how fortunate I am to have part-time high-quality care for my son with special needs, as well as an understanding and supportive work environment.
As a teacher, years ago I moved from general education to special education to help develop stronger supports for families like mine. The COVID-19 crisis has only further illuminated the need for wrap-around services and a comprehensive safety net for individuals with disabilities and their families.
An Opportunity for Growth
Despite the many challenges, this period has also been a time for personal reflection and growth. Many parents raising children with disabilities develop new skill sets over the years. As we adjust to changing realities and life expectations, many of us become more flexible and resilient, skills that have been beneficial in adjusting to new norms over the last months. A great many of us have already experienced significant life challenges. We are no strangers to hard work and understand the delicate but important balance of self-care and caregiving as we work to juggle the needs of our families and careers simultaneously.
In ways, some of my personal social opportunities have actually widened through the pandemic as the door to technology opens. I can join a Zoom book club or online networking event from home while maintaining the presence in the house my son’s safety requires. It has always been a challenge for me to join activities or events that require me to leave my home. Now, many of these opportunities are more available to me through virtual platforms as we all face the same challenge together.
In my professional work with students, this time has increased my commitment to family partnership and also offered insights of hope. As we develop classes using online methods, I am seeing my students, even those with very complex challenges, learn new skills in their use of technology. With thoughtful development, this model could take them further in education and open new doors to them in the future.
In ways, we have experienced an unplanned and communal transition in disability parenting, as much of the school experience has suddenly been moved to the home setting. As a special educator and parent, I find myself more committed than ever to help create meaningful post-high school partnerships and to further develop adult services in our community.
Without question, these times have been hard. Many of our children with disabilities also have special health care needs, and I find myself worrying more about my child’s health vulnerabilities as well. Social-emotional regulation has become the priority in our home, and we’ve very much needed the expertise of our therapists and counselors now offering services through telehealth to support our family as a whole. A trampoline for the backyard, something I’ve always considered, was recently dubbed an essential purchase.
But despite the challenges, on this Friday morning at the Lego table, between the French toast and the team presentation for work, it occurs to me that we are making it. It is surreal and at times overwhelming, but as a family we are learning to navigate these new challenges using the tools we have utilized to face previous obstacles.
Raising a child with a disability has taught me to take one day at a time, to focus with intention on the present. I remind myself to be grateful for what is in front of me, chaotic as it feels at times. New normals are hard, but I have learned on this journey they can also be beautiful.