The Kind Old Son
I could hear the rhythmic cadence of Mary breathing as she slept. It took Dakota a little longer to fade into a slumber. We had prepared him for the trip by using picture stories to explain to him where we were going, though whether he understood the full context was unclear. The matter was private to me. I could see that Mary must have needed to vent about it on Facebook; she had asked for prayers. Here the three of us lay, in the Best Western Plus on the northside of Baltimore, just past midnight, and I was the only one still awake.
Tears began to blur my vision as I read my wife’s post. The next day we were to admit our son, Dakota, to the Neuro-Behavioral Unit (NBU) of the renowned Kennedy Krieger Institute (KKI) at Johns Hopkins in downtown Baltimore. Dakota’s aggressive and destructive behaviors were completely out of control. To know that these challenges came with the package of having a severely autistic, mostly non-verbal child, was of no consolation to us. I struggled to stifle the rising sobs to avoid awakening my family, specifically Dakota because it had taken him awhile to fall asleep. He had wet his pullup, just before bed, which left him a little overstimulated. In addressing his insomnia, melatonin had become less effective. Over time, his behavioral medicine’s efficacy also grew inadequate. Our hope was that an inpatient stay would provide the clinical twenty-four-hour observation needed to create the proper medicinal regimen that would assist in modulating his behaviors. We craved a change from what I referred to as “medicinal roulette,” or the educated guesswork of outpatient doctors using a process-of-elimination methodology to find the correct medicine. I closed my eyes against my own situational insomnia. The hotel room was silent, save for the hum of the heater under the window and my heart, which seemed to scream out agonizing movie reel memories of my son’s life at ninety beats per minute onto the back of my eyelids and into my inner ear.
Dakota had been diagnosed with severe autism and endured difficulties from an early age. These included the aforementioned insomnia, hyperactivity and sensory issues. When he was a toddler, we had started using melatonin to aid his sleep, along with making dietary changes to minimize hyperactivity. Mary and I were against the idea of prescription drugs and wanted to remain natural in our approach. In kindergarten, while he was still not speaking nor potty-trained, our son was placed into a district-wide program for autism. When Dakota turned eight years old, he started showing signs of self-injurious behavior paired with minor aggression. His primary care physician (PCP) made some recommendations, and we finally caved on our anti-prescription stance to address his issues and behaviors. His aggressions dissipated for a while on the new drugs, but as he aged, gained weight, and reached maximum safe dosages, so did their effectiveness. I took a deep breath as my body tried to sigh away some stress.
Despite my fatigue, sleep would not come easy. My mind wandered back in time to a couple of years later when Dakota moved from his elementary school to an independent special school facility due to his behaviors. He was ten years old, and was becoming overly aggressive to other people at this point (biting, hitting, kicking, hairpulling, etc.). Quickly his behaviors and aggression became too much to manage. We eventually learned that his teachers had resorted to keeping our son in a ten-by-ten room by himself all day and were not teaching him anything. Our hearts broke one day when we picked him up from school. They escorted him out of the building wearing what reminded us of thick dog-training suits to protect themselves from being bitten. It was the last straw, and its memory nauseated me. Because the school district could no longer manage our son's behaviors, by law, the city had to fund his education through an appropriate private school. When he was eleven years old he started at this new school, whose program helped a little with their Applied Behavior Analysis (ABA) approach. During this time, Dakota’s behaviors came in waves but eventually, despite multiple ineffective behavioral drug treatments later, the severity of his behaviors reached a peak.
Dakota interrupted my thoughts by rolling around in bed, trying to get more comfortable. The hotel bed springs squeaked in protest as he bounced around with his half-asleep movements. After a moment, he settled down back into a statuesque slumber. His breathing deepened but not quite into a snore. I watched his silhouette for several minutes to ensure that he was fading back into the realm of a blissful sleep. Satisfied, I closed my eyes again and navigated back through time to just one year prior to arriving in Baltimore.
It was then, we were able to have Dakota approved for Virginia Medicaid through a waiver that was not income dependent. The waiver allowed us to hire an in-home caregiver to help in areas involving personal care like toileting and showering. Additionally, the city also funded in-home behavioral treatment utilizing a private company. After several months of in-home treatments and with no improvements, the company providing these services and his private school both had agreed that Dakota needed acute hospital care to get his behaviors stabilized and to find a medication regimen that would facilitate these efforts. That is when we applied to KKI. While we worked through the application process and waiting list, we prayed that he would be accepted. During this time, Dakota was at his worst. His PCP had been consulting with a developmental psychiatrist by phone on medicinal changes, since we could not get an appointment with that same psychiatrist due to a five-month waiting list. This was the “medicinal roulette,” stage of his life. I began to weep again as I lamented the misery my boy had been experiencing and the guilt that I felt. Were we all misguided in our attempt to aid him? During one episode, while on Zoloft, he had become completely manic. In the ensuing violent meltdown, he suffered a hematoma on his ear. Less than a week later, surgeons had operated on it to drain it, an outpatient surgery. That night in his room, he pulled out all of the stitches by hand. We were forced to let it heal on its own, knowing that he would just pull them out again after another surgery. We had hoped, in vain, that he would not develop cauliflower ear, though he did mildly.
Finally, our application to KKI was approved. He would receive treatment there for four months. We had learned that KKI used a very data-driven approach to solving behavioral issues in kids like Dakota. Two separate teams would be assigned to his treatment: the behavioral team and the medicinal team. The teams would not share any notes because the idea was to not have one team’s conclusions influence the methods of the other. The behavioral team would perform assessments to try to determine the root cause of certain behaviors and analyze the effectiveness of different behavioral approaches. Data would be recorded hourly on the results of their attempts. The medicinal team was charged with a similar approach, but from a prescription drug perspective. Each team would report to the same doctor who would then synthesize the information and offer advice to guide the teams throughout this process. This was John Hopkins and the best facility in the world, and we were pinning all our hope, and our son’s life, that this was the right choice.
I grabbed a tissue from the nightstand and dried my watering eyes. I could not sleep. I slowly sat up in bed and leaned back against the headboard. My mind drifted to our trip from the house to the hotel earlier in the day. We left after dinner, and we decided that I would drive. Prior to leaving, Dakota took a calming shower. Our departure had also been closer to the scheduled time for his evening medicine. Our strategy was to have him begin to get sleepy to mitigate any trouble on the long trip. We had entered the Northern Virginia metro area two hours after dusk. The overcast sky was inky black during the rural part of the trip, but as we approached civilization, the interstate became so fully illuminated from city lights that we then seemed to be moving back into an artificial sun.
As time passed, Dakota started to get agitated. Mary had strategically decided to ride in the back of the van with Dakota. The distraction techniques that she had attempted to employ were failing. One such technique was the act of playing dance music from Pandora. Another was simply cajoling him with the sweet goodness of candy corn or salty Rold Gold pretzels. As I drove at highway speeds, Dakota began to slide down in his seat in order to extend the reach of his legs to violently kick me in the back of the head. Mary recognized this as it was happening, and she rushed to stop him. It had required her to restrain him in order to prevent a serious vehicular accident. She sustained a few bites and bruises during the ensuing struggle. Dakota was surprisingly strong for his eleven-year-old frame, and it took nearly everything Mary could muster in order to hold him back from continuing to attack me. I would have preferred to swap places with Mary because I would have physically managed Dakota more easily with my size. She also suffered from scoliosis, and I had thought from any potential struggle that Mary would later be in a good deal of pain, with no hope of relief from what would likely be a firm hotel bed. Still, we had decided that I would drive because she disliked driving at night, and she equally feared driving on interstate highways.
I quietly rose from my hotel bed, and walked into the bathroom, turning the knob slowly as I closed the door behind me. I turned on the light, leaned on the sink, and stared into the mirror. My eyes bore a slight shade of pink from crying. I thought about whether we were doing the right thing. Dakota was still young with a long life ahead of him. There was still hope. There had to be, or why were we doing this? As Wilfred Owen once wrote, “Was it for this the clay grew tall?” This curse upon his life was unmerited, and I prayed for a life that he deserved. However, there was a war inside Dakota’s mind, and we were mired in the trenches with him, one inch forward, two inches back, losing hope for victory. When he was not: Biting, pinching, hitting, headbutting, scratching, kicking, or busting-holes-in-the-drywall, he was otherwise an extremely sweet child. His hugs were soft and delightful, like a cotton candy embrace.
Mary and I could have certainly used a break, and we thought that maybe this would be good for us, too. Dakota required constant care, not only from his behaviors, but also to ensure he stayed safe, did not elope, and wore a clean pullup. Sometimes we would blame ourselves. Was there something we could have done differently when he was younger to have improved his development? We felt tormented by guilt. How could we enjoy any break, when our boy would be four to five hours away in a strange city and away from his family? An involuntary and exasperated sigh escaped my lips as I left the bathroom, and I crawled back into the stiff hotel bed. Soon, I was fast asleep.
We pulled into the parking garage across from the hospital at about 6:30 AM the next morning. March was chilly that time of year in Baltimore, but I thought, from what I had seen of the sights while I was en route to the hospital, that it would have felt just as icy in the dog days of August. On the way, we had passed through a no-man’s land of dilapidated row houses that appeared as surrealist mockeries of what they once had been. That was Baltimore. I had hoped the hospital itself was better. I went to warm my chill with one last gulp of coffee as I stepped out of the van, but it was so hot that I could only sip it. I knew that I would need both hands available if Dakota decided to revolt, so I sat the coffee back into the cupholder, still half full, before closing the driver’s door on the van.
Dakota eagerly got out. He was curious, but after about fifteen feet, recognition must have struck his mind that this was no ordinary trip. He started running back to the van. We tried to force-walk him forward, each of us holding an arm, but he dropped his bodyweight to the ground. Numerous attempts to rouse him failed, and it was apparent that he was flush with anxiety. He would not be stirred from where he sat. More cars began to enter the garage and park. Soon, a woman in powdery blue scrubs approached the three of us. She asked, “Is this Dakota?” and she identified herself as working in the NBU at KKI and confirmed that they were expecting his admission that morning. Within minutes, a man attired in similar garb approached, followed a moment or two later by another woman dressed the same. As it turned out, we had parked in the KKI employee parking garage, and, as employees arrived, they flocked to the scene that was unfolding. Before long, six maybe seven angels in blue scrubs were talking sweetly to Dakota and making him feel at ease. It was a magical and spontaneous moment that calmed my spirit. Maybe this was the right decision after all. As a group, we walked slowly towards KKI.
Once on the NBU floor, we made our way to an observation room. It was about forty feet by twenty feet with the walls padded about three-quarters of the way up. It was all glossy off-white, conveying a sense of sanitary cleanliness in a city of squalor. From down the hall, I could hear the presumed sound of another child in the middle of a meltdown, with Tourette’s probably by the way she shouted. Before leaving, we were going to stay for about three hours to give him a good chance to adjust. We knew that we would be back to visit, every weekend in fact, but Dakota’s mind remained in the here and now. He suspiciously clung to his mother..
At some point we needed to leave. We decided that Mary would walk out of the room first while I diverted his attention. Dakota soon noticed that she was gone, and he clung harder to me. It seemed that he would not make the same mistake twice of being distracted. For me to leave, I knew that he had to become comfortable enough to release my arm. I made a break for the door once he did, and the orderlies, holding big pads to parry any attacks, blocked his pursuit. I rounded the corner and entered a small room with a two-way mirror wherein Mary already stood. We saw our son direct his angst into a full rage at the orderlies. I sensed a touch of fear lining the edges of his sharp, maddened screams. He gave them quite a fight, and I began to sob uncontrollably. Dakota had never been away from us overnight except for the occasional sleepover at his grandmother’s house.
As I watched, it was as if I were seeing my son for the first time. My hope faded in that moment. How can they fix that in four months? It seemed an exercise of futility, and my heart filled with despair. As Mary and I finally walked out that day, I thought that Dakota would only minimally improve, if at all. He would be autistic for life, and where would that life take him? Would he still be like this, but just bigger? Or would there be a gradual awakening, at least to some degree? My soul ached for these elusive answers.
Once discharged, Dakota came home where we had high expectations of being able to maintain execution of his behavioral plan. For a while this was successful, buttressed by the return of the previous in-home support. However, after several months and many adjustments, this behavioral plan, designed in a controlled hospital environment, became difficult to follow in the chaotic day to day of a normal household. It could not be easily implemented in a consistent manner and consistency was the key to its successful implementation. Thus, after six months of being home, we lost the in-home supports again, and the city had no other services that could help him.
Dakota was becoming a major safety issue to my wife, my other kids, and himself. A decision confronted us that no parent should ever have to make. Mary and I decided that Dakota needed to live in a secured institution. In the years that followed, we placed him in and out of three different facilities in attempts to find the right one. He was even physically assaulted by an orderly in one of them to the point that felony charges were filed, and a conviction later secured. Fast-forward and Dakota is now back living at home, a 6’ 3” 210-pound linebacker of an adult. He is still in pullups, still has limited verbal communication, and he still has aggressive behaviors from time to time. These episodes of aggression are not as frequent, but when they happen, they can be challenging and dangerous.
Looking back on that fateful trip to KKI so many years ago, after having dropped off my son, I had thought of the sixth and seventh lines of “Futility” by Wilfred Owen: “If anything might rouse him now / The kind old sun will know.” In my mind, I replaced “sun” with “son,” and I wondered whether my sad, hurting, little boy would find his way as he got older, and whether we would get to see more of the sweet, kind Dakota that was always there, yearning to be understood. I tried to imagine Dakota smiling and happy when I had stepped out of KKI that day onto the cold Baltimore concrete. My head lifted skyward, and I squinted against the midday sun, praying for its warmth as my soul prayed for hope. I can now say that Dakota is happy, as happy as one could expect anybody else to be in this world. One day, Mary and I will find a suitable adult placement for him that we can trust, but we are in no rush. My little boy has been through so much, yet as a young man, he has also come so far. My heart is overbrimming with hope for his future. For now, he is where he belongs.
Note: The essay's title is inspired by the Wilfred Owen poem,"Futility."