In times of uncertainty, life becomes like a 1,000-piece puzzle where sections I had carefully placed together suddenly jump out of place in a rippling fashion, causing other parts to dismantle. For reasons beyond my control, they cannot be simply put back together. What began as a dramatic change in our family unit, in late 2019, became only a prelude. Our world and the entire world is vastly different. We are embroiled in an infamous pandemic of the ever-mutating variants of coronavirus.
For a family with a child on the spectrum, the ripples feel even more intense. The repercussions of being out of school for a full year have hit us in ways I could have never predicted. Brady could no longer function in a mainstreamed classroom after he started attending school again in mid-March 2021. A full year of trying to learn at home when he desperately needed to be in-person with his support team was impossible to replicate. There was a slow then rapid unraveling of sorts. He could not adapt to the virtual classroom setting. I tried every day to help him by being at his side as his special education aide held daily one-to-one virtual learning sessions.
Unfortunately, some things do not translate well in new environments. Brady is not a shapeshifter. Sure, he can
adapt to smallish changes, and has improved at this as he’s aged, but when reality completely upends itself – well, that causes an onslaught of tumultuous waves that push us backward.
Kids on the spectrum need consistency in their routines. They thrive in knowing the order of things, the
sequencing. If all of this changes (from day to day, week to week) great anxiety starts to rear its ugly head. There is regression – academically, emotionally, socially. In the case of Brady, an increase in maladaptive behaviors also occur. There is not only an increase in work avoidance, but also the destruction of personal belongings, sudden bed wetting, and incessant periods of crying. During 2021, I witnessed Brady continuing to struggle with big anxiety-ridden emotions that stole his calm, disrupting our lives more than we could have imagined.
As his mother, I did what I have always done. I searched for clues and answers as to how to help him. An autism parent always has their ear to the ground, sensing for possible triggers and trying to pick up patterns in new behaviors. An autism parent also knows that she must listen and collaborate with those who care for her son
(teachers, therapists, social workers, school psychologists) to gain the clearest insight toward a new path forward.
A new path forward takes time and is complex for Brady. It involved the careful selection of new medications, a more suitable school environment, and the introduction of a higher level of support in the home. This was not an easy road to travel. There were sharp bumps, sudden slips, and times when I felt like it was all too much. What had happened to cause Brady to pull away, become explosive without notice, express that there were horrible worries in his brain? Worries that even his ‘worry eater doll’ couldn’t consume fast enough.
COVID-19 was a catalyst to this down cycling in Brady but there was more to it. His brain wasn’t feeding him positive thoughts anymore. The so-called calming and coping strategies learned years ago fell flat and became ineffective.
The uncertainty of these turbulent months led me to not only search desperately for answers and support but also to do the opposite– to pause. Now in my forties, I’ve learned to pause and not impulsively react. Pausing doesn’t mean pushing a problem to the side. It means that I am choosing to patiently wait for more clarity before deciding on plans of action.
Clarity might come with a few days of solid sleep. It might come as more information about the situation is made known to me. Clarity might show herself during silent reflection or spontaneous aha moments as I am putting items in my grocery cart or taking a shower.
I find that when I pause, I can tap into a bigger picture, stepping away from the myopic vision that often floods my perception when Brady regresses. Pausing helps me look at all the successes that have already happened in Brady’s short life (he’s now 12) and I recognize once again, how far he has come from those very early toddler
years. Pausing helps me feel gratitude for the people who have been a part of his life at various stages and how they helped point us in a better direction. It reminds me that we will find a way.
When I pause, I remember those mommas with children on the spectrum who would give anything to hear their child say something. Anything. Especially something like “I love you, Mom.” I am blessed that I get to hear Brady express his thoughts and emotions.
No matter how many steps we may take backwards, I remind myself that life is not lived in a vertical, progressive line. It is lived in the curves that roll up and down unpredictably. We do not know how long we will be steadily treading uphill. We do not know how long a downhill curve will last but we can always choose to look for things that give us hope. We can choose to be grateful for the lessons and experiences that have come before. Those give us greater clarity as we pause and reflect on alternative paths. We never lose hope for better tomorrows.
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“Mom, I was gone. Gone looking for four-leaf clovers. I found one for you,” Brady says as he opens his hand on a mild December day.
I open my hand to accept it and look down at my palm as he places it: “Wow. You found one in Winter. That’s really something, Brady.”
“Keep it,” he says as I nod and place it on the kitchen windowsill.
This clover — a reminder of the beauty of pausing and patiently looking. Looking for that unique answer in this time of unpredictable twists and turns. It’s there; we just need to believe it in order to see it.
