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April 6, 2021

Journeying Into a Life on the Spectrum

By Tara Payor, Ph.D.

Saying no bad days is unrealistic. At times, they’re strung together. We can emerge from those valleys because we choose to focus on the light, no matter how dim. We choose to focus on the small victories, no matter how treacherous the climb. We choose to focus on love over fear because, no matter the trial, love is the most realistic, good way toward a thriving perseverance.

Rachael and Andrew Rahrig’s journey with autism taught that small moments, be they tough or cheery, make up life—that unpredictable, tremendous terrain we walk each day.

Crash Into Me

Titus Rahrig is a happy, loving child with a great demeanor. Titus has autism. “He had lots of words and hit all the milestones,” recalled Andrew. By the time Titus was 18 months, the Rahrigs found themselves dancing between wonderings about autism and typical toddler behaviors. Ultimately, Titus’ regressions, loss of clarity and repetitive behaviors placed them on a two-year journey toward diagnosis.

“As a dad, I was consumed with thoughts of ‘our son is diagnosed with Autism Spectrum Disorder,’” Andrew says. Now, however, the Rahrigs approach autism with the ‘rhino concept’: “Rhinos run at 30 mph but only see 30 feet ahead,” Andrew explains. “Rhinos run without apprehension because they’re built for crashing through walls. It’s similar to parenting a child on the spectrum because we don’t know what Titus’ development will be like at 10 or at 30, but we keep running. We keep doing therapy. We keep doing what’s best for our child.” Titus, who celebrates his eighth birthday April 26, has parents who push early intervention. “We anchor ourselves in hope that his development takes leaps along the way.”

Determination

Titus recently earned student of the month at school. His days are full: attending an SDHC school for part of the day and then Applied Behavior Analysis (ABA) therapy for four hours. The Rahrigs believe fighting for a good team of people to support a child on the spectrum is key. Titus is limited in speech, and stimming (short for self-stimulation) is something ABA supports.

“We want him to master both getting energy out through stimming and having a quiet body in public,” Andrew says. Though Titus can’t communicate he likes his programs, Andrew and Rachael can tell he works hard and continues mastering things. He’s adjusted well to his baby sister, Thea, who the family welcomed last November. Rachael shares: “A family who has a child with Down Syndrome encouraged us to try for a second child and I carry them with me as a model of what family can look like.”

Re-envisioning

“Initially, I was depressed,” Andrew confesses. “I’d go to the parking lot and cry. I later realized laying down my vision of what fatherhood was supposed to look like was crucial for Titus.” Rachael, who grieved and processed differently, was Andrew’s rock, and the couple saw counselors together and individually. Professional support was a large stepping-stone toward present, brighter days.

Art, prominent in Titus’ communication, also drew its way into the Rahrigs’ processing of life on the spectrum. Literature and a commissioned painting highlighted Andrew’s need for sketching a life outlined by dignity and pride. “Re-reading Hemingway’s ‘Old Man and the Sea,’ I thought about the pride I feel being Titus’ dad. Even when there are regressions, victory is in preserving our family’s dignity.”

“Look Up,” a 5-foot, 6-inch painting by artist Paul Tepper, hangs in the Rahrig home. It’s a simultaneously private and communal way of understanding the family’s story.

Framing

The Rahrigs believe that openness about Titus having autism helps others relate to him: “We’re called to frame Titus in a way that makes our family relatable,” explains Andrew. But articulating how much time it takes operating in a world that is different can be exhausting. “Sometimes I just want to have brunch with a friend,” Rachael jokes, but insists that increasing understanding about autism is important. “We want people to know about behaviors like stimming so that they aren’t afraid to engage with us—to say things like, ‘Your son is beautiful.’”

Enduring

Andrew and Rachael’s communities of care were negatively impacted by COVID-19. “Pandemic life stripped away things we relied on for stability,” Rachael says. A year later, they’ve found their cadence again—even entertaining new rhythms. Pandemic restrictions limited Andrew’s travel for a demanding corporate job and created a first-class opportunity to pursue an entrepreneurial dream. The couple started Members Only Craft Cocktails, a family project tapping into both their strengths. For extroverted Andrew, the socialization MOCC mixed up helped carry him through 2020.

Recognizing Joy

Hemingway’s old man, Santiago, declared it well: “Now is the time to think of only one thing. That which I was born for.” Each Rahrig, like each of us, was born to be exactly who he/she is. We are individuals—not necessarily simple in a world favoring sameness. Some days, accepting and embracing the great parts of our unique selves is easy. Other days, it’s all shades of hard. Yet, canvased across all of our lives are daily opportunities to find ease and joy.

Parents: ease into eroding bedrock expectations about what—who—any child should be. Then, both old and young can find joy in the unpredictable, tremendous terrain we pave and call a life.


*Photos provided by the Rahrig family

Originally published in April 2021

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