Finding Care For My Son: "What happens if we don't find help?"
Today marked another in a winding stream of doctor’s visits to new doctors, trying desperately to find someone to take on my son’s case and help my family find some support.
My seven year old is autistic. He speaks, but continues to struggle with communicating his needs, especially in constructive ways. He is prone to meltdowns and becomes destructive when he goes over the edge. He is impulsive and prone to anger. He has trouble regulating his moods and emotions.
That same boy is incredibly sensitive. He cares deeply for the earth. He is interested in anthropology and can name every fact about arachnids. He loves to swim and to “dragon wrestle” with his grandpa or to create backstories for character on board games.
These two boys are one and they battle and clash for control of my son. He is his own collateral damage. His family is also in the blast zone.
My seven year old is autistic and he needs help. My family needs help. Everywhere we turn doors close.
In my area of Florida there are three developmental pediatricians who take cases like my son. They have refused our case—not severe enough, too severe, not the right insurance. Psychiatrists have been unwilling to take him on, citing his age or no new patients or unfamiliarity with autism. Behavioral therapy isn’t working.
Today, we went in for what we are coming to learn may be a last resort. We sat on a leather couch and spoke to the doctor. My son made animal noises and refused to speak or answer questions; he was nervous and anxious. We told our story; we answered his questions and the inevitable came: the refusal to take our case and the referral to another. Except, all the referrals were doctors who had already refused to provide my son care.
He was honest, at least, when the others haven’t been. He said my son is a danger to other patients. He said he can’t take on the risk. He explained that he can’t take on a case so complicated, especially if he doesn’t know he can help him, when it could put his staff, himself, and his other patients in danger when my son has a meltdown, becomes destructive, or needs restraint. To doctors my son is a liability.
We had reached the end. I told this man, our last hope, I understood, but I didn’t, not really. Of course I do understand wanting to keep others safe. But I’m not safe, my younger son isn’t safe, and my autistic son is a danger to himself. None of that seems to matter. The answer in a medical system based on liability and litigation is you are on your own.
How can doctors refuse someone who we know needs help? How can they keep sending us away when they can see that my son—my family—is going to break without treatment? How can this be the state of care for children like mine in the United States?
I said I understood, but my eyes gave me away. The tears came and came. And, then, my beautiful, hurting son began to cry and asked me what was wrong. I told him that I was sad and frustrated because we couldn’t find anyone to help us. He looked at me, so lost—all of us— and I told him it was not his fault. I picked my baby boy up and set him on my lap. The doctor kept talking but I just kept rubbing my baby’s back, tears streaming down our faces. His voice was small and he whispered, “what happens if we don’t find help?”
The doctor snapped his head and asked, “what did he say?”
I related my son’s answer while my son hid in my shirt.
The doctor stopped talking to us, he rubbed his heart, and he looked directly at my son. He spoke only to my son. And, something happened. He took on my son’s case. He told him he was going to help. He told him what they were going to do together. He gave a list of demands and we will meet them. We will move mountains to meet these specifications.
This interaction between a doctor and my son changed everything for my son today, but it isn’t enough. What if my son hadn't spoken up? The system is broken. Families like mine need help. What about the other families with kids like mine who don't get lucky? Where do we turn when care is refused again and again? We can and need to do better for special need kids. We must fight to support kids and doctors.