This past Sunday I had the good fortune to hear our pastor deliver a sermon entitled “Be Calm,” which frankly should be my mantra as I navigate the autism world with my two sons. I sat up a little straighter in my pew to take in his words, receptive as always (although perhaps not in practice) to any suggestions that will help reduce my sometimes chaotic life.
He related to us a story of how he had traveled to north-western Kenya several decades ago to visit a mission, and shared with us one of the most terrifying moments of his life. He was visiting his brother-in-law who had befriended an African there, one who greatly desired to show both men his treasured family farm, sixty kilometers and an extremely bumpy ride away from where they were staying. This was a remote place in Kenya, and for point of reference the sixty kilometer drive was more than four hours in the opposite direction of the nearest phone.
After a ride through the jungle that only a native of the land could navigate the three men finally stopped, and their guide explained to them that it would now be another hike up a steep mountain to actually reach the family farm.
Our pastor, reeling from jet lag, time changes, and the relentless heat declined to make the final journey, encouraging his brother-in-law and his friend to go on without him. They did, at which point our pastor was left with a locked van and no idea when his companions would return. He felt completely isolated.
Isolated, but not alone.
Within minutes native Africans had appeared on the scene, and began gesturing and pointing at our reverend. After discovering that the van was locked (and contemplating why his brother-in-law locked a van when they’re more than four hours from any type of civilization) he put his head in his hands, and the thought came unbidden into his mind that he might not make it out of there.
As he said, he was far from the familiar. Out of solutions. Out of ideas. Out of energy.
Out of hope.
Quite honestly in my autism journey with my boys I have felt all of those things, and I didn’t even have to leave the country.
Our pastor went on to describe how this experience lent itself to increasing his empathy toward other peoples’ obstacles, explaining that to him life appears a jungle at times. He described dense thickets of broken hearts, and empty wallets, both of which we have endured with our two sons. He invoked forests framed by hospital visits, and I couldn’t help but think of the dozens of doctor visits we’ve had in four different states over the last eleven years.
Although our minister pointed out that we don’t generally encounter the sounds of wild animals in our daily lives, I thought about how autism families often endure the complaints of other people when they brave the public with their autistic children, how our outings are sometimes devoid of compassion from others. He discussed how our creditors are our predators, and I thought back to the thousands we spent monthly many moons ago on our eldest’s home program when we resided in a state that offered us at most two hours a week of therapy to address the core deficits of Justin’s disorder.
I thought of other predators who steal our calm too. Our sons’ collective struggles with sleep. Their digestive issues and food aversions. The inexorable toll of my eldest’s need for ritual. The aggression that can rear its ugly head for no fathomable reason.
And worst of all, the predators who stole their happiness at times and left only suffering in their wake.
The sermon continued with the congregation being asked to imagine what it would be like to be rescued, to be safe, to have hope restored once again. Our minister encouraged us to search for that person with both vision and the direction to lead the way out.
And I will share with you now that back in the early days of our family’s struggles with autism I felt that loss of hope.
Instead of one person however, it took a village to lift me out.
Both boys’ diagnoses hit us hard, in completely different ways. Our eldest son Justin’s came about at seventeen months, after almost a year of noticing major differences in his development. At the time we lived in Virginia and had no family nearby, and the extent of my experiences with autism had been two former students who were only with me for homeroom. My husband Jeff and I didn’t know any other parents with autistic children, and in 2004 there weren’t a plethora of books written by parents on the subject (although there were a myriad of depressing websites.) Things were a little easier when our second son regressed from typical development at eighteen months as we were already relocated nearer to family and adequate Early Intervention services, but even then Jeff and I felt isolated, overwhelmed and alone.
But slowly, each time, we pulled ourselves out of that dark place. We asked more help from family. We asked for more help from friends. I joined a support group. I made invaluable friendships with other autism moms who were going through similar trials, and made friends with those with older children who could advise me and lead the way. I read Susan Senator’s book “Making Peace with Autism,” which was the first account I’d found of a family whose child never shed their autism diagnosis but had managed to reach a place of peace.
I began once again to take care of myself, to address my needs.
Our minister mentioned that most of us never leave the jungle. He said that the dense brush of issues never changes- instead, we must change.
And I’ve found this last statement to be true. Our pastor said that when we are rescued (and I believe profoundly that we must also rescue ourselves,) that our loneliness diminishes, our despair decreases, and our confusion lifts. I have created a posse of people who lift me out when times are tough, but in the end it’s up to me how I look at my life, at both the limitations and gifts autism has bestowed on my boys, and our family.
I found my calm.
And for any of you reading this who are just starting to navigate autism’s pathways, or have been in this for years and are in a place seemingly devoid of hope, please, find your person. Find your posse. Find your peace.
Do whatever it takes to find your calm.
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