En Route from New York to Washington D.C.—Getting a Parent’s Perspective
Lately in my role as AOTA President, I have been studying the current status of the evidence in support of the effectiveness of sensory integration procedures delivered within the context of occupational therapy. I was pleased to learn that, indeed, we have made significant progress in completing and publishing the results of both single-subject design studies and randomized controlled trials. So it was serendipitous that the person sitting next to me on the Acela (Amtrak Train) was a mother of a six-year-old child with autism who had been receiving occupational therapy, much of which used sensory integration procedures, ever since he was a toddler.
At this point, now that her son is in elementary school, he is getting far less occupational therapy services, but earlier on he was intensively involved several days a week. It was fascinating to hear her particular perspective and it certainly made time fly on the three and one-half hour trip to Washington.
This mother happens also to be a financial analyst, lives in New England, and characterized herself as a parent to whom school administrators listen because she is continually advocating on behalf of her son. I have to say, in general, I was saddened to hear about the daily dilemmas she faced trying to figure out the best course of action to maximize her child’s development, with the key problem being the contradictory guidance she received from the professionals with whom she interacted—educators, physicians, psychologists, occupational therapists, music therapists, and on and on. She expressed, for example, that the physicians urged her to put her child on medications but that she was deliberating whether non-pharmacologic interventions would be a better solution. She talked about some professions being hugely critical of the approaches of others, and she said that after years of “paying out of pocket” for so many interventions, she had now become distrustful of this complicated world of practitioners. If only there had been more coherence and clarity.
The good news is that, overall, she did believe that her child had benefited from occupational therapy, and that it is definitely a service that should be well funded. Nevertheless, she did not appreciate that she was instructed to purchase a pricy weighted vest that her child refused to use; that although most therapists were supportive, at least one created huge stress in her life by being critical of her parenting; and that delivery of services was inconsistent across settings—she had experienced stellar, highly professionalized occupational therapy practices as well as practices that seemed too laissez-faire—for example, not receiving the level of documentation she expected.
I think we need to stop assuming that the therapeutic use of self while providing occupational therapy services is second nature. We must work just as hard at it as at developing technical skills. We must be mindful of the sensitive nature of our every interaction with our clients, always work hard to ascertain their needs and wants, and concentrate on trying to detect how they are experiencing our every encounter with them. We must, I believe, always be trying to empathize—to sense what they are feeling. We must take the time to learn and honor the perspectives of our clients, never being imperious or officious, and always exuding care and concern. And, of course, one of the best tools for assuring appropriate continuation of treatment is outstanding documentation!