Review— God's Plan, Our Circus: A Family Odyssey Through Autism, Death and Reinvention, by Clay Boatright, Stonebrook Publishing, 2023
By Jill Escher
If you live with severe autism, or in this case, identical twins with severe autism, one survival tactic is surely indispensable: a darn great sense of humor.
In a new memoir, “God’s Plan, our Circus,” Clay Boatright, an autism dad times-two and long-time leader in the Dallas-area special needs community, tells tales of trauma and tragedy but with LOL-worthy comedic flair that at the same time is suffused with an abiding Christian ethos.
We meet young Clay and his bride Carole as they launch their dreams together. Things quickly turn scary as Carole is diagnosed with Stage II-B Hodgkin's Lymphoma, a cancer of the lymph nodes. After six months of chemotherapy, Carole survives, and some years later the couple ditch the birth control and along comes their first daughter Blaire. Things were going just dandy, but then the second pregnancy yielded, surprise!, twins and a premature delivery.
Mia and Paige were difficult from the start. They didn't sleep, they didn't nurse, they didn't meet their 2-year developmental milestones. After the autism diagnosis Clay takes us through the five stages of grief that pretty much all severe autism families will identify with: denial, anger, bargaining, depression and acceptance. He captures a part of the family experience as "OTSD":
"Many special needs families go through ongoing traumatic stress disorder (OTSD). ‘Post’ implies a past trauma. Parents of special-needs children, meanwhile, wake up their trauma every morning assuming their kids slept at all."
Nothing could have prepared them for the hardship of the early years: "The Fatherhood 101 handbook didn't have advice about kids who would never talk and who made strange noises for no apparent reason—for hours on end. Children were supposed to be potty-trained by age three, not twenty-one." There are plenty of other challenges in store: Paige's peanut allergy, their seizures, concerns about their vulnerability to sexual abuse, Paige's life-threatening weight loss, disability programs that rejected the twins due to their profound needs, public disrobing and self-stimulation. Around every corner seemed to lay another Job-like trial, another punch in the gut.
It added up to immense stress and isolation. "Carole and I fantasized about the Norman Rockwell holiday experience, but it happened only in our minds,” Clay admits. “Norman never painted a mother frustrated on Christmas as her pre-teen twins threw food across the table, their opened gifts ignored again."
Clay had started volunteering with the Arc of Dallas when a call came in from an emergency room. An 85 year-old mom had passed away, leaving a 50 year-old intellectually disabled son who had no idea what was going on. Carole knew that horrific scenario lay ahead for them. "Paige and Mia are going to live with us forever, then we'll die of old age, and nobody will know what to do," she said, echoing the deep panic felt pervasively in the autism community.
On top of his day job in the food industry, Clay became an advocate for disability services and long-term care, but recognized the Herculean hurdles, especially in Texas (one state rep didn't even know Medicaid covered services for the disabled). "Many politicians didn't consider people with disabilities as constituents but rather costs to be minimized," he writes with characteristic bluntness. And he was good at it. Politically independent, he made the rounds with both sides of the aisle at many levels of government. Even Barak Obama has a cameo here, before Clay is appointed to the President's Council on Persons with Intellectual Disabilities where he was a strong advocate for access to Medicaid waivers.
Mia and Paige were fortunate to rise to the top of the (abominable) Texas waiver waitlist, and after some time Clay and Carole start looking for residential placements. But the theme was rejection, every service provider turned them down, until they finally found a small group-home provider that would take a chance, providing relief to a highly stressed family. Carole jumped at the opportunity to return to work, but then another tragedy: cancer had re-emerged. Now, I will not tell you how the story ends for Clay, Carole, Blaire, or the twins except to say that our author manages to transition to "Clay 2.0" … and quite a few dates.
In the genre of autism parent memoirs, "God's Plan" stands out for two reasons. First, it's not sugar-coaty. It offers vivid scene after scene of agonizing chaos, isolation, hardship and very hard choices. Second, such memoirs are rarely this funny. Clay can't help it. He's a funny guy, no matter the circumstance, he will find a joke in it. As a bonus, the mid-section of the book might inspire some parents to take up advocacy just as he did.
And those who turn to faith for answers may also connect with his message. Clay finds strength in knowing that "Paige and Mia were born with their disability and were unique because God designed them that way." Of course, I would rabidly disagree and would (kinda) humbly suggest that instead the acute genotoxicity of Carole's chemo had likely tampered with her oocytes. Was it God? Was it chemo? Indeed, reading "God's Plan" reminded me of another severe autism parent memoir, "The Warner Boys," in which football great Curt Warner tells of his six surgeries before having children, including twins with severe autism. Like repeated chemo, repeated general anesthesia can be genotoxic, resulting in molecular damage to germ cells, and autism traits in offspring, based on animal studies. Autism parent stories can yield mega-clues to autism's biological origins, urgent clues that warrant serious study, but I digress.
The book also offers some explicitly pragmatic advice for special-needs parents. Chapter 9 details Clay's top 5 to-do's he would offer parents referred to him for help, mainly around finding formal and informal support in the community and getting involved.
Overall, "God's Plan" is very welcome addition to the world of autism memoirs. If you're a Texan, a Christian, a widow or widower, an autism parent in need of some guidance and a laugh, or just about anyone else, it's a worthy addition to your reading list.
Jill Escher is President of NCSA. She is also an autism research philanthropist (Escher Fund for Autism) focused on questions of germline exposures in the etiology of autism.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.