Another story about the fullness of life on the Spectrum
Everything is Ausome Every summer for more than a decade I have had the opportunity to speak several times to high school students at an academic business camp called Pennsylvania Free Enterprise Week (PFEW) in Williamsport, PA. A few weeks ago, I asked Calvin if he wanted to ride 3 hours, enjoy a night at a hotel with daddy, and swim in the hotel pool while missing a day of school. Even though he loves road trips and swimming, he said firmly, "No thank you, Daddy". I literally sweetened the offer by adding that we would get ice cream. Perhaps he didn’t understand the amazing deal, because he said, "School please." By his confident glance, I knew he fully understood the deal. Unlike most kids, he just didn't want to miss school. Calvin loves school and thank God he does, because he receives an extended school year during the summer. The extra schooling helps him work on his communication and social issues due to his autism. One struggle Calvin continues to work on is staying in his seat. Sometimes he bolts and leaves the classroom to soon. He receives additional speech therapy time and more occupational therapy to work on his fine motor skills like mastering buttoning and zipper skills. Most of all, he needs to learn to be flexible, an especially tough task for Autistic children, when his internal script doesn’t match reality. But when summer school ended last week, he happily joined me for my final overnight trip to Williamsport. Because his mother had professional obligations in Philadelphia and his big brother was away at scout camp in Lancaster County, it was just the two of us on the road. We rose early, with the car packed, mostly with my presentation material. I had two identical scripted magical presentations at two campuses for about 800 students total, With my pre-presentation set up, I had to let Calvin know that we wouldn’t check in to the hotel until about dark time. The fun parts of the trip, for Calvin, would happen the next day. At the afternoon event, Calvin hung out in the staff office, working on his own drawings, self-directed math and spelling, and learning the names of the PFEW staff while scoring a few new office supplies. Little did he know that I was in the auditorium, telling the students about Calvin's outlook on life and his ease and contentment. After my talk, Calvin showed me his fresh artwork, and helped me pack the car. We grabbed a takeout dinner, and drove across town for my evening presentation at a different location. I reminded him that we would get to the fun hotel at about dark time and we would swim in the morning after breakfast. At the second campus, Calvin knew the drill and settled into this office just down the hall from my presentation. Staff here asked if Calvin would want to see me on stage. It was fine with me, but thought he would enjoy his own creative time in the office rather than seeing me talk. I secretly did want him to see me on stage, “I’d bring him to the final minutes, if he wanted to.” On stage I didn't notice that he had, accompanied by staff, slipped into the auditorium, and was watching me speak from the back row way before the final minutes, He saw me using my best rhetoric and magical skills to motivate the energetic crowd. However, as I was getting to the part of the script where I was telling all about discovering Calvin’s autism, he bolted down the aisle with a huge grin and joined me on stage. While I needed to restore a spectator’s borrowed, burned, and signed hundred dollar bill, inside a lemon, I pretty much needed to ditch my script. Parents of the autistic know all too well about going off script. Calvin stole the show by just wandering and exploring the stage then even lying down – completely as ease. I ended kneeling next to Calvin, telling the students multiple stories about Calvin while he was in a half embrace. I urged the students to overcome whatever labels and obstacles were put before them and to work hard like Calvin; to become the best they could be. Calvin was the embodiment of being comfortable in his own skin, and he had stage presence to boot. When I picked up Calvin, he received a standing ovation and heard students call his name. Father and son were beaming with the students love, appreciation and understanding. His smile was as big as ever. It doesn't get any better than this. We finally got to the hotel. We checked in and saw the indoor pool. "Pool in the morning”, I reminded him. Tomorrow, undistracted by responsibility, I could devote to caring and playing with Calvin. Calvin punched the buttons on the elevator and ran ahead happily with the card key to our open our room. He laid out out his yellow pajamas, but I told him to wait. I explained that we would get a quick snack right after I took a quick shower. I thought about tomorrow, maybe playing mini golf with him, or even stopping at an amusement park on the way home. I also was in the post presentation high, trying to cement these new memories into my permanent hard drive – especially the unscripted exquisite moments on stage with him. Then, I slipped fell out of the shower, and broke my arm. Calvin heard me fall. I don’t remember, but I must have called out in pain. Calvin came over to help. I explained to him that I fell and hurt my arm. Lying naked, wet and semi-soapy on the floor, he got me a towel and shut off the water. Next, he brought me underwear and my short pants. I writhed into them while wincing and holding my swelling, deformed arm. Once standing, I realized I couldn’t raise my arm to put on a t-shirt, but Calvin retrieved a button down shirt. Calvin helped me with the buttons, zipped my pants and watched me gather my wallet and phone. I explained that Daddy was hurt and we were going to see a doctor. The kindness of friends and family helped us get through the night. A dear friend, David, drove us to the hospital. Before my arm was treated, Patrice's cousin, who lived in town, was able take Calvin to her house for the night, I sort of hugged him good bye (without my arms) and was relieved, when he graciously took "Auntie" Tia's hand and left. He was a trooper. As usual he was the ultimate observer studying the numbers of my blood pressure test and noticing new room numbers. Our goodbye was like all others – except, despite my pain, I was glowing with fatherly appreciation, because of his ability to go off script. As he walked away, I wondered what he knew and how he was interpreting the night. Many autism experts say that those on the spectrum cannot feel empathy; it is a tool they lack. Calvin did not seem distressed by the events, showed no outward signs of worry, cool and steady. After half the night, I was splinted and discharged with orders to reduce the swelling and find care for my broken arm near home. Another dear friend, Amber, drove me back to the hotel where I used the second half of the night to sleep. Despite having eight fluffy hotel pillows and pain meds, I got little sleep. Calvin’s Great Uncle Stevie dropped off Calvin at the hotel lobby. We got breakfast then returned to our room where he got changed for the pool. With a cast on, I couldn’t join him, but watched him float, play, swim, and jump in repeatedly. After over an hour, I was confident my pain meds had worn off; a necessary condition to driving home safely. Patrice took over as soon as we arrived home; I resumed my meds, assembled a settee of pillows, and crashed. As I was crossing over to sleep, I noticed Calvin gently inspecting my cast, and tenderly rubbing my arm. When I woke up hours later, next to the bed Calvin was finally asleep in the yellow pajamas I never got on him the night before. He was sleeping on a mat he found and dragged to the foot of my bed. Patrice later relayed to me that while I was in deep sleep, he was lying on top of my legs, crying. When she asked what was wrong he said, “Calvin is sad.” When she asked, “Why?” he said, tearfully, “I need a tissue.” For a while he punctuated his weeping with the phrase, “so sorry,” over and over. I was grateful that our unexpected journey together was so memorable. I’ll never forget that I learned that Calvin has impeccable bedside manner, the heart of caregiver, and the courage to be flexible. Experiencing his care and empathy for me…it doesn’t get any better than this.
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