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Seizures and Autism: How Climbing Helped Heal a Family

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My wife and I had just moved to Logan, in northern Utah, where I would begin my training as a music therapist. To help make ends meet, I worked Monday through Saturday as a recreation therapy aide in a skilled nursing facility. Every day I pushed residents in their wheelchairs down the hall to the auditorium, where we would do arts and crafts, have a “dance,” watch movies, or engage in some other activity. I often led the activities by myself, and I built up quite a reputation as an entertainer and charmer among all the octogenarians. We had activities two times a day and at least one activity per month focused on learning something new.This week I was excited. I was going to give a slide show about my climbing adventures and teach them about rock climbing. I had a few stories about my toughest climbs, and one really good tale about a close call and a dramatic fall. To the residents of this facility, I would look very heroic by the end of my presentation.

As I pushed one of the last residents into the auditorium, my phone buzzed in my pocket. Seeing it was my wife, I answered.

“Hi, hon—”

“Ruthie had a seizure. We are at the ER now.” She was frantic, sobbing. 

“I’m on my way,” I told her. “I’m leaving,” I said to my boss. They nodded and said, “I’ll figure this out here.”

I ran to my Jeep, then broke every speed limit on the way to the ER.

All of the residents of the skilled nursing facility were familiar with my two daughters. My wife brought the kids by at least once a week to volunteer during activities, and since I was the volunteer coordinator I got paid to play with my kids. The girls thought they had 48 grandmas and grandpas. What would those grandmas and grandpas say when they found out where I was going?

When I arrived at the ER, I rushed to the room where my 2-year-old was unconscious and surrounded by nurses and doctors. Frantic action was followed by three hours of waiting for Ruthie to regain consciousness. She woke and ate popsicles while the doctor explained febrile seizures. 

Age 6, getting an EEG to assess seizures. Photo: Richard Stubbs

We returned home to our apartment and started getting the girls ready for bed. I placed Ruthie on the floor in the front room while I prepared Tylenol per her doctor’s instructions so Ruthie  wouldn’t run a fever as she had done earlier in the day and have another seizure. When I returned to the front room, Ruthie had gone rigid, her arms and legs extended and locked. She was foaming at the mouth and started to shake. I screamed for my wife, scooped Ruthie into my arms, and pounded on our neighbor’s door. I told them I needed them to watch our oldest daughter, Lily, while we took Ruthie back to the hospital. They didn’t hesitate and both rushed in to play with Lily. My wife called the ER to tell them we were coming and we were back at the hospital. When I burst into the ER, the charge nurse looked at me and said with tears, “Oh, I really hoped it wouldn’t be you guys again.”

I placed Ruthie on a gurney and she was given medication to stop the shaking. I sat in the corner and sobbed. 

It took Ruthie more than two hours to regain consciousness, and then she was transferred to Primary Children’s Hospital in Salt Lake City for tests. During the two-hour ambulance ride in the middle of the night I kept thinking that I’d like to go climbing.

I started climbing when I was 12, and it has been my greatest stress reliever. It didn’t matter how out of control my life felt, every time I finished a climb, the unmanageable was suddenly manageable. Since getting married, and especially after having children, I had climbed less and less. It was hard to find the time. In that ER I resolved that I would climb as soon as I could. 

We moved across the country to Philadelphia to complete my training as a trauma therapist for children and adolescents. Ruthie’s condition got worse, peaking at 20 or more seizures a day. More hospital stays, more doctors, more tests, and long discussions about treatment options. We added a third daughter to the mix a year after arriving in Philly, and I completed my internship at Children’s Hospital of Philadelphia. I never gave up on wanting to go climbing, but it never seemed right. I even applied for and was offered a job as a climbing instructor at the university climbing gym. I eagerly accepted the job but then was offered a graduate research position working with traumatized adolescents. My responsibility as a mental-health professional, husband and father had to take priority, but I ached to climb. Eventually, I told myself that my climbing days were over.

Attempting a 5.10 at Poison Oak Wall, Emigrant Lake, OR. She made it, with a bit of assistance, and climbed two 5.8s. Photo: Richard Stubbs

Another two years and another daughter later, we were in Oregon. Medication started to get Ruthie’s seizures under control, but her behavior had changed dramatically. I would come home from work to find my wife bruised and bloodied from working with Ruthie as she raged through a day. More tests confirmed that Ruthie had Autism Spectrum Disorder. I felt an odd mix of relief and devastation at this news. It explained so many of her behaviors, like how she would ram herself into us as hard as she could, or why she couldn’t tolerate loud noises or changes in plans.

At this time my wife and I were also decluttering. I threw away most of my old clothes and had a large spot in my closet open. On a whim, I took out my climbing gear and hung it in that spot, and then I decided to go climbing. As soon as I was on the rock, my life felt like it was in balance again. When I got back I couldn’t stop talking about climbing, and my wife just smiled and encouraged me to go again. I started climbing more regularly, and one afternoon I took my wife and four daughters to the gym. Ruthie, who up to then had never shown a strong interest in any group activities, climbed to the top of the wall over 12 times. She smiled more than I had seen in a long time, and she talked endlessly to me about how much fun she was having. It was the longest and most satisfying conversation we had ever had. Before we left the gym, we purchased a family membership, and now we all go every week as a family.

Ruthie continues to thrive as a climber. Just as for me, climbing gives her control. When Ruthie is climbing, the world makes sense, and for a little girl who has experienced more adversity in her eight years than I have in all 34 of mine, that is priceless.

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