Humbled.

As I walked down the hall toward the next patient's room, I could hear an animalistic moaning coming from the partially opened door. "That's his room" the resident said, referring to my patient. Dominic (not his real name) is an 11 year old autistic boy admitted for having episodes where his "eyes rolled back in his head" and he wouldn't respond. A thorough neurologic workup had not discovered anything other than his baseline behavior condition. "Ok" I said, "so why is he still here?" The residents looked at each other and tentatively launched into a story about aggression issues and inpatient psych placement and the county and child protective services. Just as I was about to strategize how to tie up all these loose ends so I could send this child home the father of the boy came out of the room. We invited him to sit in the family seating area and tell us what had transpired overnight. That's when I got the real story. I don't mean the truth, because everything the residents had told me was true. I mean the reality of this boy's life and his parents' life.

When they first discovered he was autistic, they immediately starting seeking out resources in their community in Alabama. He was able to qualify for some basic therapy and an individualized learning plan (ILP) at school. The parents developed ways to communicate with him using a picture chart and quickly realized that if they stuck to a strict routine with him, his behavior was much better and things ran more smoothly at their home. However, as he got older and more withdrawn, his aggression grew. He did well while at school and with his dad around, but when alone at home with his mother and younger brother he was difficult to control. They exhausted the options the state and county had to offer but because he was "doing well in school" only a limited amount of services were available. They felt backed against a wall and were exceedingly frustrated as their little boy became more and more like a stranger to them. After searching the internet, they discovered that in Wisconsin the services were better for kids like him and that he could benefit from being entered in school here. They scraped together what little money they had and moved their family to a city where they knew no one and had no support. It wasn't long before the economic recession tightened the belt on early intervention and behavioral health services for kids. Although they immediately went to the school and county for help with their son, they were told they had to wait for a period of evaluation. And of course the county was short staffed and wasn't sure how long the process would take. They did their best, paying out of pocket for many services and scouring the internet for ideas. By this time, he had been started on multiple medications and was seeing a psychiatrist. Again, because he did well in school, his case was not given priority in the backlog of children in need of mental health services. His mother begged for someone to just understand that he was a different boy at home with her and to review his case. Meanwhile, he became more aggressive and violent. He began destroying their rented home in his fits, breaking all the windows at one point. He lost the toilet training he had learned and began having accidents multiple times a day. Because his parents still held out hope that they would get help and he would regain all that he had learned before, they didn't put him in diapers. His mother would do loads of his laundry every single day. So, they came to us a shattered and exhausted family willing to do anything to find their son some help. The county denied them services and wanted them to pay for the rest out of pocket but they had no money left. Three days before I met them, they had refused to be discharged from the hospital because his mother was afraid for her safety and the safety of her other son. They wanted us to find them a facility where he could live for a few months and stop all his medications. They no longer knew what was their son's personality and what was the medication effect. But they didn't feel safe doing that at home without support. Had we discharged him and they refused to take him home, we would have had to open a CPS case against them for "abandonment" and they could potentially lose their other son. They were a teacher and a nurse and they wouldn't have been able to continue in either of those jobs with that charge on their record. Can you imagine? After all these parents had done to improve their son's quality of life, moving to another state, using all their savings for therapies, they were desperate enough to take a chance that they would be charged with child abuse. All to save their son. So on this Monday morning, meeting this father for the first time, I felt completely impotent to help them in their struggle. Despite being a physician, I am powerless against the bureaucracy of the state and the economic times in which we currently live. I was humbled by this family's struggle.

I don't have a heroic ending for you. I didn't save the day. I sent them home with their child with the plan for admission to an inpatient mental health facility in 2 days when a spot opens up. Dominic will likely only be allowed to stay for a week at most. I don't know what will happen with his medications. For so many reasons, I am proud to be a pediatrician. But this morning reminded me that I am only one in a sea of many and for all the children I save, there will always be some who are lost.