I don’t blame anyone for asking how we’re doing these days. Since my husband and I have chosen to be transparent about our parenting journey, it’s natural for people to check in on us from time to time.
We are the proud parents of two children on the autism spectrum — a boy and a girl. They were just 9 and 7, respectively, as the world started to shut down in 2020, and ours took a drastic turn.
After years of various therapies, my son is now very verbal and able to communicate well with his parents, teachers, and peers. He requires minimal support in comparison to his sister. Currently, he’s in gifted classes and has been selected by his school district to participate in an accelerated math program.
On the other hand, even though my daughter was chronologically 7 years old at the start of the COVID-19 pandemic, cognitively she was age 3. She’s nonverbal and has an intellectual disability. This means she typically requires continuous community and medical support.
These days, since the pandemic started, my son relies mostly on occupational therapy resources. My daughter is enrolled in special education classes and relies on occupational therapy, physical therapy, and applied behavior analysis (ABA) therapy.
In 2020, millions of parents around the globe suddenly found themselves juggling unexpected additional roles. For families like mine, this was even more so.
For one, we had to attempt to mimic the layer of community and healthcare resources our children desperately needed.
As a finance professional and an attorney, my husband and I suddenly started taking on the roles of special education teachers and therapists. This, of course, had to be done in between work Zoom calls.
As we gradually learned more about the virus, we eventually turned to professional therapists who would come and go from our home.
What this meant to us included having to constantly check their and our temperatures and frequently disinfect everything.
Each day I prayed that we didn’t inadvertently pass anything on to them and vice versa.
This went on for most of 2020 and the start of 2021.
We need high-touch, hand-over-hand instruction for our kids to achieve a viable level of function. The pandemic temporarily put that reality in serious jeopardy.
Our required style of instruction once looked upon as a lifeline evolved into potentially life-threatening.
Control, oftentimes, is an illusion. That doesn’t mean we stop trying to take over life’s steering wheel.
For much of my family’s journey, I’ve tried to stay on top of every doctor’s appointment, all therapy treatments, and progress milestones and roadblocks.
I thought that by being present every step of my children’s health journeys, I would better guard them against future struggles.
But the onset of the pandemic eroded that progress. I couldn’t control the backslide. I’m supposed to protect them, and I couldn’t protect them from this.
Instead, my husband and I had a front-row seat to the slow but steady regression of our daughter’s skills.
I would wake up each morning and discover one more thing she couldn’t do as well as she did just a month earlier.
I cooked. I cleaned. I worked. I found what treatment I could for my kids in the midst of all of this. I checked on vulnerable extended family members.
When we couldn’t find a full team to administer care, my husband and I improvised and attempted to become what our children urgently needed. We were like robots with a joint goal in mind: to keep our children mentally and physically well.
The academics couldn’t have the same level of priority. Sleep, self-care, mindfulness also took back seats during this period. That was our own version of triage.
Looking back, I now realize I was on autopilot during those early months.
We’ve always been aware that because of how society is designed, families like mine often don’t have a seat at the table.
As state and local governments responded to the reality of COVID-19, this disparity was further heightened. It appeared that the needs of families, particularly families like ours, were not contemplated.
I slowly watched the dismantling of a healthcare and educational village my husband and I went to great lengths to obtain, grow, and cultivate over the previous 5 years.
When institutions make decisions outside of an inclusivity lens, the outcomes tend to hurt the very stakeholders they were built to serve.
The inability to view solutions through this wide and inclusive lens often leads to a “one-size-fits-all” approach. In our case, it was trying to lump academic processes, high touch, and special needs, which usually requires an entire village, into one virtual environment.
Even within our household, the “solution” produced very different results.
Our daughter struggled in this online environment. My son had to attend some telehealth therapy sessions, but they were nowhere near the quantity and scale of his little sister’s.
And while my son would’ve very much preferred being at school when that option became available by the end of 2020, he understood the needs of our family. We needed to be more cautious than others, mainly because of his sister’s other conditions.
My son’s ability to understand the sacrifices associated with staying vigilant was both beautiful and challenging to witness. He already showed a level of empathy for his sister and for his family at such a young age.
As author and artist Morgan Harper Nichols recently posted on social media, “it’s okay if strength looks different in this season.”
Different global societies now begin to re-enter the world outside of their homes. But there will be lingering mental health effects. We haven’t yet fully processed these as individuals and collectively as a people.
As my family and I take the step forward, we’ve made a pledge to acknowledge that, sometimes, control is indeed an illusion.
Some days may be easier to get through. Openly acknowledging this allows us to thrive.
Self-awareness is a gift. We have learned when to decompress, when to focus on self-care, and when to relieve stress.
This process was essential for moving forward through this period of trauma. We certainly learned some critical life lessons along the way.
I’m now in the position to share some of them:
The human inclination when faced with sudden, unforeseen challenges is to immediately go into “do” mode.
We find comfort or validation (probably both) in our busyness. This is based on the age-old fallacy that activity must somehow equal progress.
I’ve learned to take a pause, breathe, identify, and embrace what the present season requires.
In the flurry of movement, we fail to tap into the efficiency that a decent response to the sudden situation will give us.
This kind of reaction has the potential power of saving us a ton of wasted resources — energy, money, and emotional reservoir. Most of us can ill afford to lose any of those.
It’s in the breath, the powerful pause, that you can engage that critical switch and start feeling like you are “happening to the event” instead of the event always happening to you.
Control the controllable
And sift fact from fear.
We had to learn this in real-time during this COVID-19 era.
Most of our fears are driven by the body’s amygdala. It perceives cues from a situation and often amplifies them to spur activity geared to de-escalate the perceived danger.
Taking a pause and breathing can help to calm the amygdala. At least long enough to judge the situation more objectively and determine what’s fact and what isn’t. Then you can proceed with an appropriate course of action.
You may find out that you already have what it takes to face what was thrown at you.
At the end of the day, we may have to look in the mirror and realize we need help, and that is more than OK.
Increased self-awareness gets me one step closer toward more consistent, long-term wellness. One. Day. At. A. Time.