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November 30, 2019

Stop Sign

Recently I went on a brisk walk to get some exercise and clear my mind.
5 min read

Recently I went on a brisk walk to get some exercise and clear my mind. As I turned toward the historic trail near my home, which previously served as both a canal and a railway, I looked up and saw the stop sign at which I always pause before passing onto the path. The bottom edge of the sign was bent, and I suddenly felt the urge to smooth it out, as one might fix a curled page of an open book. Since there was no way that was going to happen, and my objective was mental freedom, not frustration, I merely snapped a picture of the blighted object and moved on. I figured: if there was some insight to gain from the defect that I had never really noticed before, then let it speak to me in its own time, on its own terms.

A few nights later, as I was putting my son to bed, he was wriggling and giggling away as usual, acting more like an acrobat than someone who should be drifting off to dreamland. As for me, I was running on fumes as I read to my son, sang his favorite songs (complete with hand motions) and prayed for him. I hate to admit that on many nights I just want to blow through our routine and begin my own nightly ritual of winding down. Cute as he may be, as he smiles from ear to ear, hoots, and does summersaults on his mattress, I often get exasperated, resorting to reprimands (“Stop jumping!”) or threats (to confiscate toys) in the effort to calm him down. Because of my own exhaustion, I can be less than fully present to my autistic child during a time when he is especially engaged with me on an emotional level. He loves sharing lyrical music and words with his mama at the end of every day.

For whatever reason, I actually paused at my son’s bedside that night, as if someone had held up a stop sign inside my soul. I looked down at my son’s face. Pure joy. Without a trace of underlying worry, fear, or distress to taint it. In that instant I knew I was observing something rare and beautiful burgeon within a human being, something akin to the Hope diamond or a shooting star. If my son’s joy had been converted into an alcoholic beverage, it would have been labeled 100 proof. Powerful stuff if one were to take it in, as I am attempting to do now.

So much of special needs parenting involves grief and vexation. Constantly slamming up against your child’s differences and deficits, which usually manifest as a painful stab to the heart or an abiding ache (or both) on a daily basis. Because my son’s language remains quite limited, he struggles to express himself, often resorting to means that are neither safe nor socially acceptable. Furthermore, his brain’s hardwiring drives him toward routine and repetition, requirements that cannot be met as rigidly as he would like to feel safe and happy. Also, the way his body processes sensory input means that sights, sounds, and touches frequently ambush him like incoming fire on the battlefield. And although I know that his meltdowns and toddler-like protests are not his fault, I can forget that fact while they are occurring. It just feels like intentional opposition—someone pulling the pin and lobbing a grenade at me. Yet again.

Most days I carry a list inside my head of about a dozen emotional or behavioral matters that need to be dealt with right now. Predicaments that I have neither the training nor the fortitude to address on my own. Like coping with a maxed-out child, securing help for my son has proven (at least for me) to be a guilt-inducing enterprise. No matter how hard you pursue therapies, treatments, and strategies, it is never enough. There will always be another whack-a-mole problem that pops up while you’re busy pounding away at something else.

I so often feel like a grade-A louse of a mom, not nearly the parent I think my child deserves. In the effort to keep him fed, clean, equipped, and connected, I play with him too little, lose my patience far too much. Even with the considerable help I have at home, my son still gets exposed to the worst sides of me. I say things to him I wish I could take back later on, worrying how damaging my words would be if he truly understood them. Perhaps he already does on some level, and I’m wreaking more havoc than I realize.

Such are the realities that threaten to drag my whole experience of parenting into a deep, dark hole.

So when I stopped long enough to glimpse a boy aglow with the light of heaven, I suddenly comprehended. In the midst of my hellish ordeal with autism, I can know not just the odd moment of peace here and there, but actual privilege. My son’s developmental disorder entraps him—and us—in small and difficult spaces, but it also creates exceptional opportunities. For him to fully surrender to good feelings without the typical filters to hold him back. For me to witness that phenomenon up close, and perhaps even share in it, as my kid goes nuts over something that is totally within my power to do. How often do we get to impart such joy with a gift as simple as a song? 

You may not be raising an autistic child, but I bet you feel chewed up and spit out by dilemmas that demand way more resources than you possess. I bet you’ve concluded that all your heartfelt efforts don’t amount to nearly enough, no matter how hard you try. I bet there are a thousand things pressing in on you, demanding that you straighten them out this instant lest the world cave in. And I bet you lay awake at night, fretting over words and actions you now regret.

The road sign with the bend? It’s saying: give yourself a chance.

A chance to feel something other than the full-throttle stress you’ve been under as you try to manage multiple issues. Something besides the pain that often accompanies long-term hardship.  Something beyond the grief and sorrow.

Contrary to that voice inside your head, that tug inside your gut, you don’t have to iron out all the kinks in your life in order to take a break any more than I had to straighten out the sign to stop at it. You can let the bend be and turn towards a kinder, gentler path. That little oasis of peace, even privilege, may already be built into your day, disguised as another chore or challenge. Yes, there are many things that you have to do, but some of them are also things that you get to do. You get to have a positive impact. You get to bring a simple gift. Chances are, you are that gift to those around you, more than you grasp in your exhaustion.

Today I’m stopping and praying for eyes to see, ears to hear, and a heart to absorb the hidden blessing amidst the affliction. The mini-miracles unfolding before me to which I get a front-row seat. Come join me and we’ll watch the credits roll for a bit till we get to the bonus scene at the end of the movie. The one that surprises and delights, that makes the waiting worthwhile.