Tuesday, January 13, 2015

Attending to the Manifesto: The importance of idiographic data collection in pediatric occupational therapy

The occupational therapy profession is unique because it is positioned as a stepping point to help people escape the despair of a liminal disability state and move toward the function that people wish to achieve, for themselves or for their children.

I have written previously on the occupation of writing and the notion of interactivity through written text.  I have come to understand over time that parents are Manifesto-writers, often taking pen to page to attempt to make sense of their parenting occupations.  I frequently evaluate children and in that context am handed Manifestos of parents who have so much to say and want to be sure that their message is adequately conveyed during what they perceive as an all-critical evaluation process.

The evaluation is a moment in time that is pulled outside of the stream of other normal interactions and it is often elevated in contextual importance.  The parent may have expectations that the evaluator is expert and many hopes are precariously stacked on the possibility that the evaluator will be able to help the parent with the meaning making process, or even to possibly find some pathway that will make sense for their child's development.

Of course the parent doesn't view any of it in such a detached phenomenological way, but nonetheless this is what often happens.

It is my hope that occupational therapy evaluators will spend more time analyzing and considering the Manifestos of those they evaluate.  Sadly, many occupational therapists don't even avail themselves of the idiographic parent Manifesto.  Instead they restrict their information to nomothetic data sets and the results are a rather incomplete understanding of occupational problems.

I am concerned that theoreticians don't spend enough time talking to actual parents and reading their Manifestos.  As a result, I imagine it must be very difficult for them to understand that the grist of the occupational therapy profession is found in the everyday stories of people who ask for help.  It is not found anywhere associated with some governmental think tank that wants the field to start bending cost curves for some nebulously defined objective of improving population health. 

One parent wrote to me:

Somedays I feel guilty for wishing my problems away.  I love my children, but I don't always love the reality that we are dealing with disabilities.  So what am I wishing away?  Some day my refrigerator won't be covered with crudely drawn images of flowers and hearts, rainbowed by the words "I love you, Mama."  I will never step on a lego, and cut my foot, leaving a blood trail from the play area, through the living room and hall into the bathroom again. Some day I will actually, at times, have to throw out milk before I get a chance to drink it all. I will do laundry once a week and all of my dishes will always be clean.  I will lose my official title of "Mom" and be forced to live the rest of my days as, simply, "Ma'am."  Is that what I really want?  I just want help.

Another parent wrote this stream of consciousness for me:

My son lives in a video game world.  I am so sick of video games.  He plays them from the time he wakes until he goes to bed.  I have to force him outside and play for a while and he doesn't ever want to leave the house.  When I force him to take a break he acts out the games saying "I am the big end guy and you are the witch so I have to hit you three times and I win" and so on and so on.  It is heartbreaking for us to see him like this.  He used to watch videos when he was younger but he would watch the same part over and over again until the tape broke.  I thought the world would end each time those tapes broke.  He takes everything literally so he is not a child that you can tell to 'hop out of the tub' because he will actually try.  When he was a baby he showed no preference to us and he would be just as happy with my sister.  But then at an appointment he thought I was leaving the room and he attacked the therapist, scratching her until she bled, because he was terrified.  The school won't give him OT because he is too smart and because he knows how to write his name.  They didn't care when I told them that he was obsessed with worksheets last year and wrote his name on papers hundreds of times a day.  What am I supposed to do?  He can write his name perfectly but every moment of every day is a stressful disaster for him and for our whole family  How can I even send him to school?

Who else can parents write to?  Sartre tells us that writing provides a medium for interactivity between the inner world of ideas and the outer world of reality. All good writing is social writing.  Solitary writing is only a dream or hallucination; real writing is a process constructed by the writer and the reader.  By this definition, I can’t write as a lone individual – there must be some ‘Other’ that answers or responds to my assertions.  In this sense, writing becomes an act of witness, and a medium for self-affirmation.

The issue for therapists to tune in to is the Appeal, typically found in whatever form the Manifesto takes.  Sometimes it will be an actual written Manifesto.  Sometimes it will be a comment.  Sometimes it will be a phone call.  Sometimes it will be unspoken, but if you are paying attention, you will read it all over the face of the parent who brings their child in for an evaluation.

The Appeal forms the basis of our social contract and it is why people come to us for help.  If we fail to attend to the Appeal and if we only gather nomothetic data to satisfy the outcome recording requirements for our government patrons then we have really missed the point, and our actual responsibility.

No comments: