Playing Nice in the Sandbox: Continuing the Mental Illness Conversation in America
I am a behavior analyst, I primarily work with individuals with developmental disabilities, but in my time in this field I have encountered an entire spectrum of mental illness. I have been pinched, kicked, hit, bitten, and scratched, had my hair pulled out and my belongings thrown around the room in the course of doing my job. In a few instances I have found myself in pretty harrowing circumstances I didn’t dare share with my parents or now my husband for fear they would try to convince me to find another line of work. Following the shooting at Sandy Hook Elementary, Liza Long published an article entitled “I am Adam Lanza’s Mother” (link to that article below). In this article Long bravely gives us insight into her family and their inner-workings. This has prompted me to think about our service delivery as a whole and how we can provide the best service for parents like Long who simply need help.
Too many times to count I have encountered families like the Longs. Things are fine, until they aren’t, and when they aren’t the only solution may be to call the police and eventually repeated instances lead to hospitalization. When the child has recovered from their “outburst” they are sent back home only to be brought back at a later date for another explosive incident. There doesn’t seem to be a middle ground for some of these families, some kind of overlap from hospital to home.
I recall once receiving a phone call from an exasperated parent who was at the end of her rope. Her 21 year-old son was having what she called an “episode”. For the last three days he had completely torn their home apart from top to bottom. Mom was afraid to be left alone with him and had completely lost control of the situation. I asked if she had called his psychiatrist and what his opinion was on the matter. “He said it’s just an episode and we have to ride it out” was her response. Before seeking help from a behavior analyst, when these “episodes” happened, she had two choices: ride it out, or take him to the hospital.
During my graduate education the term “playing nice in the sandbox” was mentioned early and often. Behavior analysts as a whole do not have the greatest reputation in the field of psychology. Historically we have been stubborn, unyielding in our convictions, and can exude a “my way or the highway” type of mentality. The new school of behavior analysis (a school I am proud to be a part of) teaches collaboration with a multitude of disciplines in the hope of providing the best level of care we can for our clients. The deeper I get in to my own career the more I understand the sandbox preach of my professors. So often I will meet with school program directors, occupational therapists, psychiatrists, and speech therapists who think that their discipline is the one that is going to best help their client, when in reality, the best approach involves a treatment “team” full of qualified professionals working together to develop a multi-dimensional plan. It is when I have been a part of a team like the one described that I see the best outcome for the child and that child’s family.
What’s worse is when treatment is not working, it becomes very convenient to point the finger at anyone who isn’t you. “The psychiatrist must need to adjust his meds”, “the teachers need to deal with this, it’s only happening at school”, “ABA therapy shouldn’t be working on communication, a speech therapist should”, “she shouldn’t come to OT until her behaviors are under control” are all things I have heard others say at one time or another. Thinking about hearing these things from a parents’ perspective can be a scary thought, where are they supposed to go from there? In the instance described above of my 21 year-old client, a qualified treatment team working together could have prevented this explosive “episode” from happening in the first place.
So as a parent, what can you do to ensure your special-needs child is receiving the best level of care? Educate yourself. Learn the system, learn what services your child is entitled to, and try your best to get them. Don’t accept anything at face value, ask questions, challenge responses, and don’t accept no for an answer. Don’t be distracted by “fad” treatments that promise to cure your child, they won’t. Be the leader of your treatment team and hold each and every clinician responsible for the outcome of their treatment and the progress, or lack thereof, that your child is making. For a child with a developmental disability a treatment team should include an occupational therapist to evaluate sensory and physical needs, a physician to monitor any underlying medical conditions, a psychologist to correctly diagnose the child and offer counseling to the family, a psychiatrist to manage and or evaluate the need for medications, and a behavior analyst to help the child and their family manage problem behaviors and evaluate treatment outcomes. This is absolutely not an exhaustive list but my opinion of what a basic treatment team should include. The most important aspect of the team must be that each and every professional is willing and eager to collaborate with one another.
What can we clinicians do to ensure we are providing the best service for our clients? Play nice in the sandbox. Without a functioning and respectful relationship with the rest of the treatment team, we can get caught up in our own egos and miss what is most important, helping your child. After all, isn’t that why we’re here in the first place?
Link to “I am Adam Lanza’s Mother”:
https://www.huffpost.com/entry/i-am-adam-lanzas-mother-mental-illness-conversation_n_2311009
Link to resources from Autism Speaks:
https://www.autismspeaks.org/resource-guide