🔒My son, in crisis, one year later

If you were in the McDonald’s parking lot in Auburn on May 19, you likely spotted the bearded man full-on ugly crying for 15+ minutes in his car, while his 10-year-old daughter glanced up occasionally from her iPad, mildly concerned. That was me. 

My wife had just called during the commute home, to say the May Institute had approved our 13-year-old son for placement into its residential school. Waves of relief radiated off of me as the realization of what our family had endured for a year might finally reach a new beginning. That relief was immediately followed by the crushing guilt of what this meant: Our son, our sweet Desmond, would no longer live at home with his family.

My body couldn’t handle the intensity, and I broke down.

In the WBJ issue of Nov. 22, 2021, which like this edition was focused on health care, I detailed the special kind of hell Desmond, my wife Sarah, our other four children, and I had suffered as we sought the best treatment for Desmond’s mental health problems. At the time, he had been a patient at Boston Children’s Hospital, waiting since July 2021 in a crisis state until a bed became available at a temporary behavioral treatment facility.

That bed did open up, and Desmond was placed into a Westborough hospital in January. It was, predictably, a disaster. Sarah and I knew these facilities only keep patients for a couple of weeks, return them to what they see as baseline, and send them home. This stay was particularly horrible, as the Westborough providers immediately tore up the prescription schedule we had spent months carefully curating with his psychiatrist, neurologist, and the providers at Boston Children’s. Desmond came out of Westborough worse than he went in.

Our goal, though, was never a temporary treatment facility. The goal was permanent residential placement into a school like the May Institute, which we thought would be the solution.

As a parent, it’s all but impossible to admit to yourself that the best life for your child is in a living arrangement outside your home. Desmond’s long-time neurologist had floated this possibility well before the COVID pandemic exacerbated his problems, but residential was part of a suite of options and something to hopefully avoid with the right mix of school, at-home therapies, and medication. Sarah and I didn’t fully come around to it as a path forward until well into his third month at Boston Children’s, when it was clear he posed a real threat to his siblings’ safety. Still, the gravity of the decision weighed heavily on us and Desmond, who kept asking if the people at his eventual residential house would be his new mom and dad.

Once our home school district in Wilbraham agreed to residential placement, a monumental feat in itself, we had to find a school to accept him, which was an uphill battle as the entire human service sector is facing a severe staff shortage. To aid in his placement, we had to show Desmond was no longer in a behavioral crisis, and we couldn’t take him back to the emergency room, even though his occasional frenetic behaviors forced Sarah and I to create a complex web of safety precautions. I slept in his room every night, using my body and an old mattress placed against his door as a barricade between us and the rest of the sleeping members of our family. Even though I lived in constant fear the wrong sound would set him off, most nights Desmond simply wanted to cuddle or talk about Disney. This went on for five months.

When the time came this July for Desmond’s placement into the May Institute residential school, it did feel like a new beginning, as awful as it was to leave him behind. That new beginning was short-lived, though. Within his first week, Desmond landed in the emergency room, as a sound had panicked him and he slammed his head against concrete. That was followed by allegations of abuse, more than two dozen errors in his medication administration, including once when he was given a potentially fatal double dose of a controlled substance, and meetings with school leaders who promise to do better.

Now, we’re stuck. While we could attempt to move Desmond to another school, there’s no solution beyond residential placement we’re aware of, so we’re trying to make this work. In some ways, my family has been extraordinarily fortunate in the support we’ve gotten for our five children on the autism spectrum, as many parents could only dream of getting this far into the convoluted behavioral healthcare system. Yet, as much progress as we’ve made, Desmond is far from getting exactly what he needs.

Today, when people discuss solutions to fix the systemic problems in behavioral health care, my thoughts drift to those who already sought out help and couldn’t find it: the homeless, the incarcerated, those suffering in silence at home, those who died. I think of my son.

This crisis remains.