Victoria Tatum has spent more than two decades fighting for services for her autistic son, Eliot. As her son became a teen, his anxiety made him increasingly violent. She thinks Santa Cruz families need better intervention, sooner, for families with special needs.
“There is no behavior we haven’t seen,” Andrea Gold, the head of The Bay School, told me when our autistic son, Eliot, was 12, and for eight years that was our “golden ticket.”
My husband, Blue, and I struggled for years to find teachers who could work with Eliot, our persistently cheerful, unpredictable kid with a “Dr. Evil” smile. Then, in early 2000, we found The Bay School, a nonprofit school located on Capitola Road which serves 47 students ages 5 to 22.
The teachers use applied behavior analysis (ABA) to help kids with autism and/or developmental disabilities learn at their own pace. While public schools also have programs that do this, they are not equipped to deal with the behaviors kids like Eliot often have. That’s why some parents drive daily to The Bay School from as far away as San Francisco.
It’s that hard to find good services for autistic kids.
Kids like Eliot do not sit quietly in a row of desks listening to a teacher. When they are overwhelmed, they can react by punching, kicking, or screaming. Such behavior is off-putting and scary, even for the mothers like me, who have spent years working with our children.
I’ve gotten down on my knees, cried, and prayed many times. It helps.
According to the Center for Disease Control and Prevention, about one in 44 kids in the U.S. has autism. With that many families affected, it shouldn’t be this difficult to find help, particularly in California, where services are plentiful and autism is a well-researched condition.
I believe public schools can and must do better, by devoting resources, more money, more staff, more training to helping the toughest cases, instead of reacting only after those cases explode. Not every parent has the means, energy, or time I had to search for solutions for my son.
Autistic kids are often not grounded in their bodies, which makes traditional education models and activities like sports teams or summer camps a challenge. At The Bay School, teachers like Andy Vo used Eliot’s love of music to inspire him to read, do math — and dance. Eliot loves to shake his booty.
Andy could also handle the hard moments. He and other teachers are trained in safe holds, ways of restraining, but not injuring, students who become violent. I once watched Eliot start kicking when his teachers tried to escort him from the building. Andy calmly reached down and grasped the insides of Eliot’s pant legs to stop him. The simplicity of the action astonished me. I felt tremendous relief, knowing Eliot was in the right place.
At 17, Eliot’s “flight or fight response” increased. Even activities he normally loves, like concerts or swimming, can induce anxiety, and as that anxiety builds, he lashes out. Eliot’s behaviors ramped up enough that we had to install locks on his bedroom doors, our bedroom doors, and my office for times like the dinner hour, when I needed to cook without having to fend off unexpected punches. Many times I went to bed knowing sleep was the only thing that would recharge me enough to face the next day.
At age 21 in 2016, Eliot said he was done with The Bay School. By then he could read, write and do basic math, and I knew I needed to listen.
Blue and I made a plan to help him transition to semi-independence. We had learned to always have a plan with Eliot, as well as a Plan B. In the initial years after we left The Bay School, Plan B often failed. I spent months locked in my office calling agencies and doctors, begging for help.
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When I saw people sleeping or having mental breakdowns on the street, I felt blessed. We had the resources and the stamina to keep our son safe.
But in desperation, in May of 2020, we accepted a placement in a home for special needs adults known as a level 4i home, where the staff assured us they could handle Eliot.
During that time, my friend Nancy Yellin, whose son Aaron was Eliot’s best friend and who lived to be just 21 due to a rare genetic disorder, gave me Kevin Fedarko’s “The Emerald Mile,” the story of Kenton Grua’s remarkable trip down the Grand Canyon on a wooden dory. In the book, the people rowing the boat feared the unexpected unknown, what they called “Mr. W.” They feared it so much, they didn’t want to say its name out loud.
In the book, Grua made the trip and broke the Grand Canyon speed record. Eliot, too, broke his own record. Within an hour of moving into his new home, he started throwing punches.
The staff — who we thought was trained — had no idea what to do.
Police arrived and took Eliot to the Behavioral Health Unit, the psychiatric health facility on Soquel Avenue in Santa Cruz, and kept him on a 72-hour hold.
At this point, we faced the terrible truth that we had to leave our son in a place we knew would traumatize him in order to get the services he needed. I knew that if we bailed him out, he would not qualify for help. That’s the irony of the system. You have to fail that badly — be at the end of all possible plans — to get assistance.
I called Blue and our daughter, Carly, Eliot’s older sister who lives in San Diego. Carly had often been the target of Eliot’s outbursts and was just figuring out how to be a sister to him.
Even before I called her, Carly had sensed something was wrong. She had spent the day crying, but didn’t know why. I believe an invisible thread links them, the unknown, unknowable. “Mr. W.”
Trauma and help
Landing in the BHU did finally get us the care we needed.
We got a placement in a crisis home in Hollister with Summit Therapeutic Services. On a Monday morning, at the end of the 72-hour hold, Summit home’s director, Ray Fierro, a big guy with tats on his forearms, showed up in a van and scooped up Eliot. Ray and the other Summit staff are trained in safe holds, deescalation and person-centered trauma, and they knew what to do, even with Eliot. It felt like a miracle.
Summit also nurtured healthy coping mechanisms and provided a therapist as well as a psychiatrist for medication. Before Summit, our most heartfelt conversations with Eliot had averaged 10 minutes. At Summit, Eliot started talking to staff for nearly 30 minutes.
The nearly two years Eliot has spent with Summit have allowed me to miss him, love him deeper, and wish for his return to the knot of our family. It has allowed Blue and me to start dreaming again, and to plan for the semi-independent life Eliot will return to in the fall.
Summit has been my family’s second “golden ticket,” a chance for a life that does not always verge on crisis.
More families with special needs deserve this kind of service. Parents with special needs kids are among the most patient, devoted people I know. We need to offer them options for services well before a trauma strikes.
When a mother holds her newborn son for the first time, she is not imagining a future where she has to lock herself away from him. Nor one where she has to let him get arrested to finally get the help he needs. We should not have to fail in order to get help for our kids.
Victoria Tatum is a writer living in Santa Cruz who has spent 26 years advocating for her special needs son.