Thursday, December 21, 2006

Folie à deux

Folie à deux is a psychological term referring to the situation when two or more people share the same delusion. Delusions are funny things, and difficult to disprove, particularly when more than one person starts seeing them.

This all relates to Mary, who taught me about love, and trust, and delusions, and perceptions - and ultimately what matters most.


It seemed strange that the doctor didn't request physical therapy as well, I thought, as I watched Mary limp down the hallway in a traditional hemiplegic gait pattern while using a quad cane. I remembered practicing that Trendelenberg gait in college with my classmates, accentuating the weakness of the hip abductors. The difference here was that Mary certainly wasn't faking or pretending with her newly acquired gait pattern. A serious look was on her face, and her arm was clenched tightly to her side in an angry and tense position. In college I guess we really didn’t stop to think about the people behind those gait patterns as we pranced around late at night to study for a neurorehabilitation examination. It wasn't real then, but now Mary was very real.

Mary was 23 years old and studying to be a rehab counselor. She found that to be quite ironic: that she had studied to counsel people who were in her exact situation. Of course none of her knowledge gained could be applied to her own situation. The things you study in school don't seem real - at least not until they happen to a person.

Mary was engaged to be married, almost done with school, and then she had the CVA. Her CVA, or cerebrovascular accident, was caused by a burst blood vessel in her brain - a branch of the middle cerebral artery. The blood vessel supplied areas of her brain responsible for control of the right side of her body. As a result, she had significant weakness of her right leg, and her right arm was positioned in a reflexive position tightly held against her body. Her hand was fisted, and essentially not able to be used functionally for any purpose.

Mary’s fiancé never wavered, never stopped loving or supporting her - and although she found this unbelievable, all of her wedding plans went hurtling on to their conclusion. She felt as though her life had stopped, and that all these events were continuing along with her, but without her. She was not the same person.

At least she didn't feel like she was. Mary’s disability pained her deeply. One day, after returning to the therapy room following a bathroom break, I noticed that her eyes were a little glassy and red. "Mary, what is wrong? You seemed to be in a good mood earlier. Is something bothering you??" Mary broke down, crying. She told me, "In the bathroom, the paper towel dispenser says to pull down on the towel with both hands. And I can't." I didn't say anything as she leaned forward and cried into my shirt. I just held her. Sometimes that is all you can do.

Well, later that day I pulled off all the labels on the towel dispensers that said to use both hands. I still do, when I see them in public restrooms today. I know that Mary doesn't go into men's rooms, wherever she is. But I still always do it anyway.

Mary’s goals were relatively simple: she wanted all of her wedding videos and wedding pictures to look "normal." She did not want to have to wear an arm sling. She did not want her arm contorted and flexed violently against her beautiful wedding dress. And she did not want to limp or have to use a cane when walking down the aisle. She wanted her wedding to be "normal." "If my family and my fiancé are going to continue to treat me as if there is nothing wrong with me, and that all these plans are naturally going to continue on, then I am not going to be the one to burst the bubble." Mary wondered why everyone acted as though nothing had changed. Was this folie à deux? Or something more?

"When I walk down that aisle, I just want my arm to be relaxed. I don't want my shoulder to be hiked up. I don't want my elbow bent. And I don't want my wrist and hand to be so bent."

God bless Bobath, and Brunnstrom, and all the other therapists who designed the treatment techniques that are commonly used to decrease the muscle tone for a patient who has hemiplegia. Mary was intent on achieving her goals, and she wanted to achieve them badly. Every day we worked on activities that would meet these ends. We designed home programs. We made splints. We did everything I could think to do to help decrease the muscle tone in her arm.

Over time, a muscle that is in a constant state of contraction will begin to naturally shorten. Mary would have none of that. "Please stretch out my hand," she would ask. Please help me be sure that it will never get contracted, and stuck in that horrible position." Day after day we worked toward these goals, and over time, the muscle tone in her arm decreased. She didn't gain a lot of voluntary movement back in her arm, but she was pleased that it did not look deformed.

There were other issues that she wanted to address, and she would bring them to my attention. "Do you know how hard it is for me to put on a bra with one hand? Or to take care of my period? You just don't know!" She would laugh at me about this. "Well Mary, I am out of my league, and I think I need to have one of the other therapists work with you on that stuff." I was the only male in the department, and we commonly swapped patients for training when it came to such issues. Mary was very close to my age, and I was a guy, and most patients have some sensitivity about such things, so we of course would always accommodate for these kinds of situations.

Mary had a hurt look in her eyes when I told her this. "But you are my therapist. And I trust you." I didn't know what to say to that immediately, and she continued, "I'll tell you what. I'll teach you how to do it with two hands, and then you can help me learn how to do it with one." And that is what we did.

The spring turned to summer, and Mary's wedding date was fast approaching. She came to therapy one day and immediately blurted out, "I had the strangest dream last night, and you were in it. We were stretching my arm and my hand, and I remember so desperately wanting it to look normal. You looked at me and said, 'I think I know what I can do to help.' After stretching my arm, you told me to hold it over the table, and that you would climb up onto the table and jump down onto it. In my heart, I knew that this maneuver would break my arm, and that it would hurt tremendously. But I put my arm out over the table, and closed my eyes waiting for you to do it. I knew it would hurt, and I knew I would cry, but I trusted you. I knew that I could trust you. Anyway, the dream never finished, and that is all I remember waking up to."

I just looked at her. What are you supposed to say to someone who tells you that they trust you that much?


The last I saw Mary was at her wedding, a couple weeks after her dream. I took lots of pictures, and her left arm is hanging loosely at her side, hand open. For those that didn't know her intimately, they would not know the severity of her disability from the way she looked.

There was no cane as she walked down the aisle. I never fancied myself as a wedding choreographer, but I suggested that both her Mom and Dad walk her down the aisle to present her to her future husband. With the support of her parents to the right and to the left, there was no side on which she could limp.

Mary met her goals. She looked beautiful in her wedding dress. No one could "see" her disability. So was this all folie à deux? I don't think so. Instead, it was all about love and all about people placing trust in a goal and caring for each other. And really, what is ‘reality’ and ‘disability’ when you remember to see through that kind of love?

Monday, December 11, 2006

Christmas messages as considered by a pediatric occupational therapist

I wanted to write some Christmas-theme entries this month but I ironically have not had the time. Life can sometimes get very busy.

Being busy is precisely the topic I wanted to discuss. Adult occupational behavior around the holidays is fascinating to study. I don't want to get into a lengthy treatise about the meaning of shopping - but let's face it - is holiday shopping a healthy or unhealthy occupational experience? Watch adults in the mall and you will understand the question.

Western societies are consumer-oriented. Corporations spend untold billions of dollars based on our classification as consumers. Consumer-focused messages are reinforced by cultural practices that remind us what grouping we are in and how that fits in with our status as occupational and social beings. So, I am sent messages that this is my 'prime' as a human being on the planet. These are my 'productive' years - I am past the tumult of young adulthood and this time is prior to the tumult of any aging issues. I have arrived. (trumpets sound). This is my opportunity to leave my impression. This is my time in life to BUY! At least the corporations think so.

I personally don't believe a word of it. It is a story that is a lie - and I have the pictures to prove it.

The pictures I am referring to were at my parent's home for years. They were taken in the late 1960s, and they are arranged side by side in a frame that opens like a book. Standing on edge, they complement one another.

A few years ago, as a birthday present, my parents had copies of these pictures made and gave them to me. They put them in a similar frame as the original pictures.

The pictures are of my brother and I, playing in the front yard of the home where we were raised. My brother's picture is on the left, and my picture is on the right. In some respects, the pictures are panoramic - we were facing each other but the background is a continuous scene. In the pictures I imagine I am only 3, my brother 5. I can tell I am that young for several reasons (my mom doesn't recall when the originals were taken). But my hair is still quite blonde (it really didn't start turning brown until school age) and there is that characteristic fleshiness around my fingers and hands in the pictures - the kind of soft and gentle pudginess you can notice when you look at the knuckles and the back of the hands of children that age.

Anyway, we are both crouched down (as an adult, I marvel at how children can play from this position for hours on end). Some large sized rocks are placed down along the fence that separated our yard from the neighbor's driveway. The lawn was thick, and an ivy and violet mixture grew along the fence, reaching into the yard.

Around the rocks is an aluminum pie tin, filled with an inch or so of water. And in the pictures we are maneuvering dinosaurs up and down the rocks, into the pie tin.

The dinosaurs are mostly red. There are a couple dull green ones. No realism here - not like toys that my children have today. Just plain, single-colored plastic dinosaurs. I am moving a dimetrodon. I see an ankylosaurus. One is rather fantastic looking - a brontosaurus-like dinosaur with wings.

If I close my eyes, I can remember playing with them. Remember the way they feel. Remember the warmth of the stone in the summer sun, and the coolness of the water that I would ask my mother to replenish when my brother and I went out to play in the morning.

My occupation at that time was to play. In that moment that the picture was taken I was a highly productive occupational being.

These memories make me question some basic assumptions that are made about my relative productivity at this time in my life. It makes me think about the occupations that I help children with every day. Which occupations really are of most value? What, exactly, constitutes human productivity?

So as I pause and reflect on human productivity and the false stories we are told about the economy of our species, sometimes I think that our most productive years are behind us. And we spend the rest of our days trying to recapture that same innocence and sense of wonder.

Christmas is approaching. We all have so many jobs to do - so many tasks to complete - so much productivity to achieve. Many of us as adults will be running around madly to find this or that gift and to get it all done 'in time' - we would all do well to stop and remember some innocence and wonder. Observe your children - and think of innocence and wonder as the intended output measures of human occupation.

I promise, it will put you in a frame of mind to receive a very different Christmas message than the one intended for the people in the shopping mall.

Monday, December 04, 2006

random thoughts on superstition, tradition, conviction and evidence-based practice in occupational therapy

For various reasons I have been called to task regarding an analysis of what I believe in - and I thought that the philosophical definitions are important so I wanted to yell them to the rafters, so to speak. Issues of internal consistency are important to me, so I was interested to find that my work vs. non-work need for evidence was quite different. I'm still not entirely sure how to resolve that issue – perhaps it is not important.


Superstitions often stem from folklore or historical reinforcement of confusion between causation and correlation. Common response experiences and confounding variables contribute heavily to confusion that is then reinforced through repetition. In this sequence of events, superstition translates to mythology and there is high risk for it to be further transmitted into tradition. I am aware of the debate, but count me among those who believe that 'folk psychology' is real. I know that eliminative materialists will take me to task, but I think hobbits know all about folklore. Even though superstition might be a true psychological model it probably is not be the best vehicle for scientific progress. We have lots of superstitions in OT - most notable is our historical explanation of what sensory integration exactly IS. I have recently referenced that we are making some progress on neurophysiological correlates of sensory processing disorders, but up until recently we had very little to say about real causative factors. Instead we have generated a lot of superstition around sensory interventions - from weighted vests to brushing protocols.

Beyond superstitions people also sometimes believe things because of tradition. Traditions are customs and practices that are passed on from generation to generation. The reason for continuing tradition is often for tradition's sake. Tradition is what Tevye uses to keep his family moving forward. Traditions contribute to identity and they certainly feel good - but again they are also probably not the best model for scientific progress. OT has lots of traditions too - like why splinting is perpetuated in our scope of practice. Tradition makes occupational therapists focus on upper extremities and physical therapists focus on lower extremities. Tradition, in part, perpetuates craft use as a therapeutic modality. Traditions can be good or bad; they can be restorative and generative or consumptive and pathological.

Conviction is a fixed or strong belief. I think the best synonym is surety - from the Latin securus - secure. I always like conviction, but the only problem is that conviction can be belief in anything, even if it is dreadfully wrong.

Evidence-based practice, as it is broadly defined, is the systematic methodology designed to integrate research evidence into the clinical reasoning process (Tickle-Degnen, 1999). Concern has been raised about application of a medical model of evidence-based practice to occupational therapy (CAOT, 1999). Where much of evidence-based practice in medicine is based upon broad epidemiological studies, the application to occupational therapy is more specific in that evidence-based practice should help clinicians “to make decisions about interventions that are effective for a specific client" (Law & Baum, 1998, p.131). This approach that combines evidence-based practice with the concept of client-centeredness has been reported in the occupational therapy literature (Egan, M., Dubouloz, C.J., von Zweck, C., & Vallerand. J., 1998).

Critical appraisal is a significant component of evidence-based practice (Crombie, 1996, pp. 1-2). Critical appraisal is the analysis of data that allows for a practitioner to engage in evidence-based practice. Where evidence-based practice is an end, critical appraisal supplies a means.

Tickle-Degnen (2000) identified the steps that clinicians must take in integrating evidence into practice, but it is evident that many clinicians are not fully participating in the process (Rappolt & Tassone, 2002; Dysart & Tomlin, 2002). This is important to the profession of occupation therapy because of the longstanding contract that we have with those who ‘consume’ our services. Patients and reimbursement systems both expect high quality, effective, and efficient care. Occupational therapy is at risk of becoming irrelevant unless the profession is able to convince consumers that clinical decision making is based on sound and rationale scientific data, and that this data is meaningfully applied to the individual’s life experiences.

The task of teaching skills of critical appraisal for evidence-based practice to clinicians is daunting. Clinicians are faced with time constraints, varying degrees of administrative support, challenges in being able to access ‘evidence,’ and lack of training in how to conduct critical appraisal (Tickle-Degnen, 2000; Ottenbacher, Tickle-Degnen, Hasselkus, 2002). I believe that we have a better opportunity for teaching evidence-based practice to students, as they are approaching their learning with more of a ‘tabula rasa.’ It is much more challenging for clinicians to ‘unlearn’ years of practice that is often based upon superstitions, traditions, or negative convictions. Still, all of our students do ultimately pass through clinical sites for their training, and for this reason it will be critical to send students to fieldwork sites that incorporate concepts of ‘best practice’ and who use models of evidence-based practice.

These are important issues – I think everyone should spend some time visiting them.


Canadian Association of Occupational Therapy (1999). Joint position statement on evidence-based occupational therapy. Canadian Journal of Occupational Therapy, 66, 267-273.

Crombie, I.K. (1996). The Pocket Guide to Critical Appraisal. London: BMJ Publishing Group.

Dysart AM & Tomlin GS (2002). Factors related to evidence-based practice among U.S.
occupational therapy clinicians. American Journal of Occupational Therapy. 56, 275-84.

Egan, M., Dubouloz, C.J., von Zweck, C., & Vallerand, J. (1998). The client-centred evidence-based practice of occupational therapy. Canadian Journal of Occupational Therapy, 65, 136-143.

Law, M., & Baum, C. (1998). Evidence-based occupational therapy. Canadian Journal of Occupational Therapy, 65, 131-135.

Ottenbacher KJ, Tickle-Degnen L, & Hasselkus BR (2002). Therapists awake! The challenge of evidence-based occupational therapy. American Journal of Occupational Therapy, 56, 247-9.

Rappolt S; Tassone M. (2002). How rehabilitation therapists gather, evaluate, and implement new knowledge. Journal of continuing education in the health professions, 22, 170-80.

Tickle-Degnen, L. (1999). Evidence Based Practice Forum: Organizing, Evaluating, and Using Evidence in Occupational Therapy Practice. American Journal of Occupational Therapy, 53, 537-539.

Tickle-Degnen, L. (2000). Evidence-based practice forum: Gathering current research evidence to enhance clinical reasoning. American Journal of Occupational Therapy, 54, 102-105.

Tickle-Degnen, L. (2000). Evidence-Based Practice Forum: Teaching Evidence Based Practice. American Journal of Occupational Therapy, 54, 559-560.

Thursday, November 30, 2006

physical agent modalities and competency in occupational therapy

It will be interesting to see how far and wide this issue travels - I expect that my answer will make some people angry and other people very happy - but either way I view this as a question that comes along that is just too good for me to ignore -

Today I was asked for my opinion on the following question:

"I am a COTA and I have attended a couple of workshops on Anadyne Therapy. It is an infrared treatment modality used to treat patients with peripheral neuropathy. Treatment will initially consist of a pre-sensory test (Semmes-Weinstein monofilaments), treatment with the Anadyne and fine motor exercises. The question is: Does an OTR have to do the initial evaluation which would be the pre-sensory test prior to the treament? I am able to conduct the test and the treatment but I don't know if legally I can."

Here is my response:

According to the NY State Board of Regents, occupational therapy assistants as a rule have not demonstrated competence to perform evaluations, so they generally do not perform them. All licensed individuals must practice within their personal scope of competence. However, the occupational therapy supervisor may delegate performing an evaluation to the occupational therapy assistant if the occupational therapy assistant has demonstrated competence to perform evaluations. That leaves professional responsibility for errors of commission or omission between the OTR and COTA who decide to have the COTA complete an evaluation. So whether or not you are capable of completing evaluations is entirely between you and your supervising OTR.

In any event, the individual practitioner is subject to Part 29 Rules of the Board of Regents which requires that licensees practice within their personal scope of competence. If you are not competent to provide a service that you are legally allowed to provide, then you may not provide that service. As a licensed professional, it is your responsibility to practice within the scope of your abilities and expertise. If you practice outside your personal scope of competence, you can be charged with professional misconduct.

Under the Regulations of the Commissioner, Part 76, it states that OT interventions include, where appropriate for such purposes, and under appropriate conditions, modalities and techniques based on approaches taught in an occupational therapy curriculum and included in a program of professional education in occupational therapy registered by the department, and consistent with areas of individual competence. These approaches are based on:

The neurological and physiological sciences as taught in a registered occupational therapy professional education program. Modalities and techniques may be based on, but not limited to, any one or more of the following:

sensory integrative approaches;
developmental approaches;
sensorimotor approaches;
neurophysiological treatment approaches;
muscle reeducation;
superficial heat and cold; or
cognitive and perceptual remediation.

Infrared or phototherapy is not mentioned at all in the regulations. I am not aware that this is a standard part of any occupational therapy curriculum and I do not know that it really falls within the occupational therapy scope of practice. I would highly doubt that infrared biophysiology is taught in the typical OTA curriculum, as it involves high level educational background in both chemistry and physics.

As the use of infrared can cause severe harm if inadvertently applied over a malignancy or a pregnancy, and as there is reason to debate if it is even an appropriate OT modality, and particularly given the fact that attending a couple inservices certainly doesn't qualify someone to use a potentially dangerous modality - I would strongly suggest that a COTAs use of this modality in these circumstances could potentially constitute professional misconduct.

Unless you have background in chemistry and physics, and unless you can understand and articulate and explain the biophysical changes that are occurring at the tissue level as a result of the IR (e.g. nitric oxide microcirculation effects), and unless you have had formal training that involves evaluation and competency assessment - I would recommend that you steer clear of this intervention modality.

As an OTR with a clinical doctorate and 20 years of experience and who has taken chemistry and physics courses and who has a basic understanding of how IR works - I still don't believe it is an appropriate OT modality and I would never use it. That is my professional opinion.

This has nothing to do with the potential efficacy of IR interventions - this is just a statement on competency and appropriateness of this modality for OT in general and by COTAs in particular.

As an aside, I am continually shocked and amazed at what some OTs think they are qualified to do. I hope that PTs far and wide smack down any OTs who use modalities that they are not appropriately educated and trained to use. Training also has to include competency assessment.

A final thought for OTs: if you look at a problem and all you can see is a peripheral neuropathy and that perhaps the best intervention is to mediate the problem with a physical agent modality and exercise - are you really still an occupational therapist?


Check your state's licensure laws - here is the link to the NY info:

Tuesday, November 28, 2006

The Day I Saved Andy’s Life

I am not in a life-saving profession - at least not in the traditional medical interpretation of life-saving. I was never really interested in wielding that kind of power, although in many ways I think that I have learned that traditional life-saving power is easily reducible to a little chemistry, a little anatomy, a little slight of hand and technical know-how. Little else.

This is not meant to downplay that technical expertise though. Actually I am humbled by those who perform such acts on a daily basis.

I saved someone's life once. That is what I have been told anyway. I like to tell this story because the moral is that sometimes you might be in a position to make a difference, even if you did not put yourself in that position, and even if you had no intention of making a difference. I think that is important information to have tucked away for reference purposes.

One day my phone rang and it was my buddy John. John was an itinerant therapist in the truest sense of the word - meaning that he participated in his health care career episodically. Last I knew he was an FBI agent. Anyway, he told me "I told my sister-in-law to call you because they are worried about their son Andy's development - he is around 16 months old and he isn't walking yet. They are pretty worried, and I think they are going to call you this afternoon."

"No problem, John," I replied. "I'll see them right away." As I hung up the phone I remembered what a good friend John was, and that I was glad to do this for him. For his family, really. Immediately, the phone rang. It was John's in-laws, and we made an appointment for that afternoon. It was a late appointment, after hours, but I wanted to accommodate them. Least I could do.

Because of seeing him so quickly, the parents were not able to get a referral - this meant that their insurance might not cover the evaluation. As they went through the intake process and I listened to them debate the potential cost I grabbed the paperwork from them and told the receptionist we would worry about the insurance later.

"Andy's not been feeling well lately," his parents stated as I took a history. He had achieved all of his developmental milestones in a typical fashion but at 12 months everything seemed to stall. He stopped pulling himself up to furniture. He never took an independent step. And he was chronically ill: low grade fevers, sleeping more often, vomiting. His pediatrician was stumped, and kept recommending symptomatic treatment. Because Andy was not walking, the pediatrician agreed to refer him to a neurologist, but the waiting list was long and the appointment was not for another month. The parents couldn't wait that long, happened to mention it to John, and that is why they came to see me. I am not a neurologist, nor a diagnostician, but I am trained to complete developmental evaluations - and that would at least be a start.

Andy was cachectic. Pale. Clinging to his mother. He was clearly ill. I listened to the parents concerns as they explained the change in his behavior over the last couple months. They also expressed their concern that they couldn't see the neurologist as soon as they wanted to. Andy demonstrated typical development for fine motor skills, but when he reached for toys I noticed a subtle unsteadiness in his movements. The subtlety is difficult to describe... my initial impressions were that my eyes were de-focusing. As I concentrated strongly I could see that his entire body had a very slight shakiness to it. It was not just his hand or arm; the shaking was central to his trunk as well. It did not measurably impact on his performance, and he was able to crawl for mobility. When he was placed in a standing position he would become very upset and cry uncontrollably. "He does that every time we try to make him stand," the father stated. "It's as if he doesn't like the way it feels when he stands."

"Always listen to parents," I repeated in my mind as I tucked the information away. Although parents generally don't know the medical terminology or reasons, they are usually best at describing and identifying symptoms.

As I completed my observations, I was moving Andy's legs and arms to measure his range of motion and muscle tone. His ankles felt a little tight to me, but that is not always uncommon in children that are growing quickly. I quickly stretched the muscles to elicit any abnormalities in muscle tone, but there were none. Whimsically, I tapped on the patellar tendon to check deep tendon reflexes. His leg shot out *briskly* - moreso than it should have. As I tested these reflexes in other areas I noticed that they were all quite brisk. "Wow," I thought to myself. "I generally don't bother checking these reflexes, particularly in a child with no known problems, and I was glad that I took the time to check." I talk to myself all the time while completing evaluations.

I sat back to consider my observations, and started reaching for words that I could say to the parents. They wanted an opinion. They wanted to DO something to help their child. This is the moment when the therapist is on the hot seat.

As we began to chat, Andy burped, and then vomited. This was not your typical regurgitation of recently consumed liquid that can accompany a baby's hearty belch: this vomit came from someplace deeper, and it shot out of his mouth exorcist-style all over my cabinets. This is where having children can help a therapist keep their cool. I could handle vomit. I went into cleanup mode, shutting down my sensory awareness of smell and touch as I cleaned up. "I can do this," I thought to myself - just as I had done many times with my own children. "Dear God," I prayed quietly, "please help me do this."

As the parents bustled alongside me, cleaning up Andy, cleaning up everything, they worried together about his being sick, about how they had just been to the pediatrician yesterday and he said to just let 'the virus' run its course. "Just keep hydrating him," the doctor told them... I don't know if it was the vomit, or my own mind spinning, but their voices fell into the background as other pieces of information came swirling together into a logical and deadly serious pattern.

Andy had a history of unexplained low-grade fevers. He lacked energy. He *looked* sick. His motor development stopped, and he had no tolerance for being in positions where his balance was challenged. He had that very slight... ataxia? "Ataxia," I said to myself. "That is what I am seeing. And brisk deep tendon reflexes. But I paused myself, knowing that I don't always even bother to check them. "Maybe they weren't that brisk," I said to myself as I tried to talk myself out of my observations. Then I continued to think... "Projectile vomiting???" Excusing myself, I ran to the phone.

In my office, I attempted to call the pediatrician, but could not reach him. I had him paged, but he did not return the call. My mind spinning, I phoned the medical director of our division. "Dr. Johnson, I have a kid here with..." as I described all of the symptoms. "I think I should send him to the emergency room, but I can't reach the pediatrician." Dr. Johnson, ever politically correct, told me - "You're on your own then. The pediatrician should be the one to make that call though, and as I am not there I don't know what to tell you. I suggest that you keep trying to reach the pediatrician." No help there.

As I walked back to the therapy room, I knew the parents would want an explanation. I considered the fact that they were worried about insurance coverage, and I knew that having no referral to the emergency room would really cost them some money. But as I walked I considered my experience. I read these symptoms before in my textbooks. I read them in charts of patients. I knew that I needed to trust myself. Without giving a single explanation or point of justification I told the parents with conviction, "I suggest that you try to see a neurologist sooner than your scheduled appointment. If you go to the emergency department you can insist that they call the attending neurologist." I swallowed the lump in my throat as I considered the charges they were about to incur because we had no referral to the emergency department. "If it were my child, I would go now."

Andy's parents looked at each other, looked at me, and without a word between them both responded, "Let's go."

I escorted the family downstairs to the emergency department, wondering if I would incur the wrath of the pediatrician, of the parents, and the ridicule of the emergency department staff. But I saw what I saw what I saw what I saw. There was no refuting what I saw. I provided a copy of my observations to the Emergency Department resident who read my notes with a cocked eyebrow. "This is a gutsy report," he told me. "I better call the attending."

I said goodbye to the family, trying to put the whole sequence of events out of my mind as I drove home to my own children. All night long my observations replayed in my head. Did I really see what I thought I saw? I am not prone to questioning myself. But I questioned myself all night.

The next day was a Saturday, and I was scheduled to work. I checked the computer system to see if Andy was discharged but it said that he wasn't. I decided that this didn't mean anything because billing entries are often a little delayed on the weekend. He may have gone home and it just wasn't recorded yet.

As I made my rounds in the pediatric ICU I looked up at the board to see where my patients were. I saw Andy's last name on the board, and I immediately ran to his bedside and grabbed the chart.

As I scanned the notes I read the diagnosis over and over again. Posterior fossa medullablastoma. As the tumor was so advanced they chose to operate immediately - that very night. I looked up to see Andy resting quietly in bed, the gentle whir of the ventilator pushing air into his lungs. The back of his head was shaved, and he had an externalized shunt to drain excess fluid off of his brain.

One of the medical fellows in the ICU walked up beside me, saying, "I hear that someone in your department made a good catch on this case. Neurosurgical service said his tumor was so big that it was a wonder he was not in a coma. He is lucky to be alive."

"Oh. Wow." I sputtered out, not knowing what else to say.

Andy had to have a second operation because they could not remove the tumor entirely the first time. He also underwent radiation treatments and chemotherapy. He survived, although he had some significant brain damage as a result of the tumor and the effects of all the treatments.

Andy became a regular at the hospital for the next few years as he went through all of this treatment. Each time I would see the family they would turn to any person that was walking by, grab them, and say, "This is the man who saved our son's life." I always thought to myself that it was really the neurosurgeon and the ICU staff who technically saved his life. I never got used to them saying this, but I always graciously accepted their thanks.

Last that I knew, Andy was attending school and living at home. He is blind, and severely mentally retarded. But he is a member of his family, and he is loved. And he is alive.

When I doubt myself, or when I think I should go home early, or if I accidentally let insurance issues get in the way - I think of Andy. And I think that sometimes you can make a difference even when it is not your immediate intention.

Monday, November 20, 2006

Monday, November 13, 2006

child passenger safety

I don't typically pass around web sites that I think people should go visit although I have done so lately. I hope that when people see that I am referring a web site that it is not the equivalence of junk mail or spam. I would only send you somewhere that I really think you need to visit.

I got involved in child passenger safety sometime in the late 90s. I was forced there out of necessity and parent demand - a parent whose child had a spica cast chastised the hospital I was working in because there was no appropriate restraint to send her child home in. I am thankful to that parent to this day; I am not sure if she is aware of the changes that were made because of her concerns.

I educated myself on the issue and learned that a nationwide education campaign resulted in increased use of child restraint devices in automobiles but many children are still restrained improperly (Glassbrenner, 2003). National studies demonstrate that the misuse rate of child restraint devices in automobiles is as high as 80% (NHTSA, 1996). Proper installation and use of car seats is extremely effective in saving children's lives and reducing the risk of injury. Specifically, child safety seats reduce the risk of death in passenger cars by about 70% for infants and 55% for toddlers ages one to four (NHTSA, 2001).

Even with education and even with good intents and even when procedures are followed there is still no such thing as a guarantee. Click here to watch the a video tribute to Kyle David Miller; his parents uploaded this video to YouTube and you all really need to see it.


Glassbrenner, D. (2003, February). The use of child restraints in 2002. Retrieved September 3, 2003, from

National Highway Traffic Safety Administration, U.S. Department of Transportation. Observed patterns of misuse of child safety seats. Traffic Tech, Sept. 1996. Washington (DC): NHTSA; 1996.

National Highway Traffic Safety Administration, U.S. Department of Transportation. Traffic Safety Facts 2000: Occupant protection. Washington: NHTSA; 2001. Available from: URL:

Tuesday, November 07, 2006

Clinical problem solving in occupational therapy and the need to eliminate special case thinking

Lots and lots of questions these days and I am doing my best to answer them...

What I would like to try here is to throw my problem solving methodology to the winds and perhaps if someone finds this useful there will be fewer questions in the world. Is that likely?

There is a difference between a primary problem and a secondary behavioral attribute but people constantly confuse the two. So when someone says, "My child won't pay attention," or "One kid on my caseload won't eat any solid foods" they will often look for a direct and concrete answer to their 'problem' and completely misunderstand what the 'problem' really is. Let's take one example and walk through it.

First of all, if you have a clinical/presenting problem, place it in a circle at the top of the page and then make 5 circles underneath it. Five is a random number, but these circles will represent the POSSIBLE causes of the problem in the circle above:



Then start filling in the details. This is your opportunity to be creative. Let your mind fly over all the potential reasons.

Let's talk about why a child won't sit during circle time. Here are 5 possible reasons off the top of my head:

1. He is only three years old and has no experience with this context and the behavioral expectations.
2. He has an organic neurological problem like a TBI, MR, lead poisoning, etc.
3. He has to go to bathroom, or any number of common sense possibilities.
4. He has no concept of behavioral boundaries; his parents let him run roughshod all over the house with no consequences.
5. The lesson plan is not adequately engaging or developmentally appropriate.

I am absolutely certain that there are many other possible reasons here but this will do for now. The trap that clinicians (and those that rely on them) fall into is to start swinging at the behaviors but not really knowing what the problem is. Everyone wants a simple answer, and here are some examples of simple answers:

1. Implement a brushing program - the child obviously has some regulatory problems. Use lots of deep pressure, heavy work prior to sitting, and a weighted blanket or 'lap buddy' or weighted vest while sitting at circle time. Incorporate movement into circle time to accomodate for the child's obvious sensory seeking behaviors.

2. Implement a behavioral program. Use a token system that reinforces desired behavior and chart progress accordingly.

3. Refer to the physician, asking to evaluate for ADHD. This child clearly needs medication.

4. Enroll the parents in a parenting program. They need to learn how to set limits because this child is simply out of control.

Any of these answers may be inherently inappropriate for the given situation. What happens is that clinicians and intervention teams get into ruts and start swinging their sensory bats at this pitch, or their behavioral bats at this pitch - excuse the baseball analogy. Sometimes they will hit a home run, but sometimes they will strike out. You can't automatically use the same 'bat' to try to hit a pitch - you need to choose your intervention to meet the actual need.

A dose of R. Buckminster Fuller fits here:

"I am enthusiastic over humanity’s extraordinary and sometimes very timely ingenuities. If you are in a shipwreck and all the boats are gone, a piano top buoyant enough to keep you afloat that comes along makes a fortuitous life preserver. But this is not to say that the best way to design a life preserver is in the form of a piano top. I think that we are clinging to a great many piano tops in accepting yesterday’s fortuitous contrivings as constituting the only means for solving a given problem. Our brains deal exclusively with special-case experiences. Only our minds are able to discover the generalized principles operating without exception in each and every special-experience case which if detected and mastered will give knowledgeable advantage in all instances."

So my strong recommendation is that next time you believe that you are presented with a problem, make sure that you really have a problem and not a secondary behavioral attribute that is associated with the problem. Root out the cause of the behavior and your treatment plan will be so much more likely to be effective.

Finally, if you find yourself stuck in a rut and swinging the same kind of bat at every problem you perceive - please spend a couple hours with Bucky Fuller. I promise that you will be cured of special case thinking.


Fuller, R.B. (1968). Operating Manual for Spaceship Earth, Carbondale: Southern Illinois University Press.

Friday, November 03, 2006

Pediatric encopresis and occupational therapy

Today I had contact with three families who were all dealing with problems relating to encopresis. Encopresis can be essentially defined as a lack of fecal continence and it is a huge problem for families. I have to admit that there was no training in my occupational therapy curriculum relating to encopresis, although occupational therapists spend a lot of time talking about helping people with self care activities of daily living. I suppose that my educational programs assumed that intervention ends when a child can let their pants down and sit on the potty?

The lack of any mention of pediatric encopresis in the occupational therapy literature certainly doesn't stop occupational therapists from weighing in on this subject when it comes to giving parents advice. I read an evaluation once where a therapist talked about a child's constipation and encopresis being related to a craving for deep pressure stimulation, and it was a reflection of poor sensory processing. The recommended treatment was to provide the Wilbarger protocol every two hours until bowel habits became more regular. Recently I had another parent ask me if there were sensory contributions to encopresis and I had to admit that there is no evidence in the literature to suggest that.

So what is the evidence about encopresis? A Cochrane Revew review (2006) identified that behavioral interventions when used together with laxative therapy may improve continence in children with non-organic fecal incontinence and constipation. Biofeedback interventions did not seem to have any positive effects. So in trying to help one family with this problem we tried writing a social story as a cognitive-behavioral strategy to improving continence. The parents are still ruling out medical issues - so I am not sure what the answer will be.

The literature points to several difference issues relating to encopresis that OTs need to be aware of. There are significant psychological differences between children who have encopresis and peers who do not (Cox, Morris, Borowitz, & Sutphen, 2002). However, not all of those differences fall within the range of 'clinical significance' on behavioral measures.

In another study, Klages, (2005) found that children who had early onset Bipolar I disorder were more likely to have encopresis and atypical/hostile mother-child interaction. When writing that it is reminiscent of autism and refrigerator-mom research, but I think their point was that children who have encopresis also had disturbed parental relationships as part of an overall 'phenotype' to Bipolar I disorder.

In another study Johnston and Wright (1993) identified a co-morbidity between encopresis and attention problems. In sum, kids who had encopresis had much higher (clinically significant) scores on the Hyperactive subscale of the CBCL.

These different studies all point out interesting facts about encopresis. Some children who have encopresis have measured differences on their CBCL scores, but not all of those differences are in the range of clinical significance. Some kids have elevated hyperactivity CBCL scores that are clinically significant. Another group of kids have encopresis associated with more severe mental illness, specifically Bipolar I disorder. For intervention, laxatives probably help and cognitive-behavioral approaches probably help.

So are there sensory factors? I suppose one could argue about the nature of the term 'sensory.' It seems that children who have encopresis may have some difficulties with attention and therefore 'regulatory' function. Perhaps there is a subset of children who have encopresis related to decreased ability to attend to internal messages that they need to go to the bathroom. We still need to gather more information before we recommend brushing programs for children like this though.


Brazzelli M, Griffiths P. (2006) Behavioural and cognitive interventions with or without other treatments for the management of faecal incontinence in children (Cochrane Review). The Cochrane Database of Systematic Reviews 2006, Issue 2. Art. No.: CD002240.

Cox, D.J., Morris, J., Borowitz, S.M., & Sutphen, J.L. (2002). Psychological differences of children with and without chronic encopresis. Journal of Pediatric Psychology, 27, 585-591.

Johnston, B.D., Wright, J.A. (1993). Attentional dysfunction in children with encopresis. Journal of Developmental and Behavioral Pediatrics, 14, 381-385.

Klages, T., Geller, B. Tillman, R., Bolhofner, K., & Zimerman, B. (2005). Controlled study of encopresis and enuresis in children with a prepubertal and early adolescent bipolar-I disorder phenotype. Journal of the American Academy of Child Adolescent Psychiatry, 44(10), 1050-7.

Thursday, November 02, 2006

Smiles from Nicholas

I knew a boy named Nicholas, and I don't think that it needs to be confidential any longer. Nicholas had cerebral palsy and I was randomly chosen to be his occupational therapist. That's the way referral patterns go sometimes - and it just amazes me - because on any given day as an occupational therapist you just don't know what your life might be thrown toward.

I am not going to attempt to re-tell Nicholas' story because his parents have already documented it far better than I ever could.

I would like to ask everyone to go visit their web site and Foundation Smiles from Nicholas.

I learned a lot from Nicholas and his family So although there were tears, there was laughter more. And although there was pain, there was joy more. And when things seemed bleakest, they lived.

I have been thinking about them a lot and I don't know how a world can right itself after the death of a child, but I trust that it will in one way or another (with a a little help from above of course).

Nicholas and his family inspire me, and I know you will feel the same. Please go visit, and enjoy some Smiles from Nicholas.

Monday, October 30, 2006

DSM and SPD: Are we ready?

October 25-31 is National Sensory Awareness Week and The Knowledge in Development (KID) Foundation is working to obtain inclusion of Sensory Processing Disorder in the DSM (Diagnostic and Statistical Manual). DSM classification would presumably raise awareness of the disorder and contribute to appropriate diagnosis and recognition. The press information from the KID foundation also states that the addition of SPD in the DSM will help reimbursement for treatment.

I fundamentally agree with this effort but I really wonder if we have enough information about sensory processing disorders to present a cogent argument for inclusion. According to the American Psychiatric Association "each disorder included in the manual is accompanied by a set of diagnostic criteria and text containing information about the disorder, such as associated features, prevalence, familial patterns, age-, culture- and gender-specific features, and differential diagnosis. No information about treatment or presumed etiology is included."

Although we have made some excellent progress toward developing tools to identify sensory processing disorders (i.e. The Sensory Profiles) I am not sure that we have completed the research to gather prevalence, familial patterns, or other features. There is some preliminary evidence that we have done about linking measured neurophysiological differences to Sensory Profile scores - which provides some good scientific validation, but I don't know that we have done enough yet.

Finally, we should not rely on a DSM-IV or DSM-V inclusion to support reimbursement. If children who have SPD also have significant impairments in functional performance then short term occupational therapy intervention would be presumably be covered under a related diagnosis code. We really don't know if SPD is a diagnosis unto itself or if it is a clinical feature that is sometimes associated with other conditions. Again, more research is necessary to make this distinction.

In the meantime I strongly recommend that we continue our research efforts to focus on validating neurophysiological markers associated with atypical Sensory Profiles as well as use of tools such as the Children's Assessment of Participation and Enjoyment or the School Function Assessment to measure any performance/function related difficulties of children who presumably have a sensory processing disorder. Gathering additional data related to prevalence, familial patterns, etc. would also be helpful.


American Psychiatric Association (n.d.) FAQs about DSM. Retrieved 10/30/06 from

Brown, C., Tollefson, N., Dunn, W., Cromwell, R., & Filion, D. (2001). The Adult Sensory Profile: Measuring patterns of sensory processing. American Journal of Occupational Therapy, 55, 75-82.

Miller, L., McIntosh, D., McGrath, J., Shyu, V., Lampe, M., Taylor, A., Tassone, F., Neitzel, K., Stackhouse, T., & Hagerman, R. (1999). Electrodermal responses to sensory stimuli in individuals with fragile X syndrome: A preliminary project. American Journal of Medical Genetics, 83(4), 268-279.

The KID Foundation (2006, October 12). Advocacy. Retrieved 10/30/06 from

Wednesday, October 25, 2006

on polar bears and autism

Parents are bombarded with messages about autism and that unfortunately fuels worry and speculation. It also fuels early diagnosis which is never bad.

I was recently observing an infant who has some motor delays and the parent was very worried about some atypical repetitive behaviors. The baby would sit and stare at the carpet while running his fingers through the carpet pile. Over. And over.

Repetitive and non-purposeful behaviors always need to be assessed. However, this child has excellent play and social interaction skills - so the parent did not understand why he would engage in this very autistic-looking type of behavior.

To some degree children thrive on repetition and adults will become bored by an activity long before a child will. So, a child may repetitively place a ball through a series of ramps and watch it over and over as it rolls to the bottom - but this is just a way that they learn about cause and effect. This doesn't mean that they have autistic-like behaviors, and these must always be distinguished from normal repetitive play tendencies on infants and toddlers.

This carpet-rubbing behavior was not play-like and would last long past the amount of time it should otherwise last. So we needed to consider other options. Most notably, the behavior would only occur when toys were removed from the immediate reach of the child. The child has motor delays and is not yet functionally mobile, so I considered that the likely cause of this behavior was boredom and a desire for stimulation when there was no stimulation (toys) present in the immediate environment.

There is always risk in bringing up animal models when discussing human behavior but I admit to liking the simplicity of animal models. The child's behavior reminded me of the polar bears at the zoo. I recall visiting the zoo before all the studies came out about enriching zoo environments to improve the health and reproductive interest of the animals for conservation efforts. The polar bears used to pace back and forth in their environments, repetitively, for hours. I recall logging polar bear behavior over the course of several years in different zoos and in non-stimulating environments the pacing behavior was almost always repetitively present. However, when they gave the bears some barrels and floating 'ice cube floats' in the water for them to interact with the pacing behavior immediately decreased. I know that I am not an animal behavior specialist and this is by no means a scientific study but it is my observation.

So when I moved the toys within reach of my young friend his rug-rubbing behaviors stopped immediately and he went right back to appropriate interaction with the toy.

This is not to say that there are not concerns to monitor and issues to address for my young friend, but they are probably not autistic concerns. Rather, this underscores the importance of understanding how motor delays in young infants may lead to non-productive and even stereotypical play behaviors. Seems like an idea for a good study - although I would limit it to children within the 0-2 age range (sensorimotor period of development) because I imagine that long term motor restriction in children who have functional language leads to a different set of sometimes atypical behaviors (relatively increased verbal scores on classic IQ tests) - but that is another set of ideas.

So I hope the mom feels a little better with my description of 'primary' autistic signs and 'secondary' autistic-like behavior. We'll watch and see what happens.

Monday, October 16, 2006

swinger of birches

We had a little snow here late last week that extended my hiatus away from the computer. This is a view of my backyard from the deck. The bowed trees are a clump of four river birch that are approximately 30 feet tall (well, when they were standing). I planted the trees there on purpose, so I could look at them from my office window in my house.

Anyway, there are still many people in the Western New York area still without electricity, heat, etc. and we are very fortunate.

Much of the snow is melting now and my birches are struggling to stand again. I think they will.

I don't mind that this happened; it reminds me of important lessons that I like to think of as I go about my daily work. Thank you, Robert Frost:

So was I once myself a swinger of birches.
And so I dream of going back to be.
It's when I'm weary of considerations,
And life is too much like a pathless wood
Where your face burns and tickles with the cobwebs
Broken across it, and one eye is weeping
From a twig's having lashed across it open.
I'd like to get away from earth awhile
And then come back to it and begin over.
May no fate wilfully misunderstand me
And half grant what I wish and snatch me away
Not to return. Earth's the right place for love:
I don't know where it's likely to go better.
I'd like to go by climbing a birch tree,
And climb black branches up a snow-white trunk
Toward heaven, till the tree could bear no more,
But dipped its top and set me down again.
That would be good both going and coming back.
One could do worse than be a swinger of birches.

Tuesday, September 26, 2006

more on transparency: CSE meetings, second opinion and fair use

Another CSE meeting recently, another issue with transparency. Professionals can sometimes disagree, which is bound to happen because children's performance is subject to variability. When test performance varies across different tests that are supposed to measure the same construct both professionals should be open and concerned enough to try to explore and understand the difference between test scores.

I have never had a problem releasing raw test data to occupational therapy colleagues. I understand that there are issues with randomly releasing test materials and manuals to the general public, but most people agree that in the case of 'second opinions' it is not objectionable for a professional to release raw data to another similarly credentialed professional upon request and upon consent from the family. The materials pass directly between professionals, and should never involve parents, lawyers, etc. unless there is some court order to do so.

Today a (non-OT) professional didn't want to release raw data to one of their colleagues, citing confidentiality issues. Patient confidentiality is not the guiding issue with raw data release - trade secret and copyright law is. Obviously they were more interested in finding excuses to avoid sharing information than they were in helping the child.

In sum, it represented obstruction. The professional finally stated that they would be willing to have a face to face meeting with whoever would provide the second opinion, but my hopes for that are slim because we haven't been able to convince them to even contact the professional for a phone consult.

Generally when we discuss terms like "agenda-setting," "obstruction," and "control" in the same sentence we are referring to politics. It concerns me when an agenda for a CSE or 504 meeting is so tightly controlled that it precludes the team members from bringing up concerns. Additionally, in my recent meeting when I raised the issue of writing competency for a seventh grade student there was little interest in considering the concern; rather, there was an attack on my 'credential' to comment on a student's writing. The committee was willing to allow me to comment on writing legibility, but not on writing organization or process.

What is an occupational therapist's purview? I told them that I am a licensed professional who looks at a child's functional performance in their environment. Does that make me an English teacher - of course not. But does it mean that as a professional I may have observations or information for the team to consider - I would think so. This particular child has serious difficulties with visual organization, making it very difficult to coherently construct sentences - and all this is on top of legibility and spacing concerns. So for you OTs out there - next time you do a school inservice and all you talk about is how to HOLD THE PENCIL, please consider that you may be educating your teams incompletely and they may not come to understand OT as a profession that has the ability to provide broader recommendations than pencil grips and slant boards.

Sad news: before the meeting I am willing to bet that those educators could have been heard saying, "Parents aren't involved enough" or "We aren't holding kids to the proper standards." I hear teachers say this every day. So why does the story change when we enter a CSE meeting? Suddenly we take an involved parent and define them as an overbearing parent who expects too much. Then they make statements about how a child is functioning "just like" all of the other kids in the class. When it counts the most, accountability and standards really go flying out the window.

Instead the committee got fed a test result that directly contradicts the result of the outside professional, the meeting agenda gets controlled, there is a refusal to share the raw data, attempts to discuss it are shot down with attacks against credentials, and ultimately the child receives less than what they should receive. Special education, when it is at its worst, can he horribly broken.

Not all is lost: many districts really do things the proper way. But it is so disappointing when they don't.

Thursday, September 21, 2006

occupation in action

So much of what we read about in our occupational therapy journals has to do with models of medical illness. Disability models are traditional practice for health care professionals. Therapists feel 'comfortable' when working within these systems.

In 1985 I took an undergraduate Community Health course. At that time the concept of community health was in its infancy and we were just seeing the beginnings of a move away from inpatient and institutional care. I recall that the course gave me the idea that one day we would not be in hospitals, developmental centers, and large state institutions for the chronically ill.

We have made some progress since that time, but I often wonder why more OTs are not in private practice or doing more work in the community. OTs still prefer the safety nets of institutions and agencies. Practice is decidedly more community based than when I first graduated: there is a lot more home care - both for infants and adults. More services are provided in Head Start programs and neighborhood schools, and more services are provided in assisted living facilities and day programs.

Still, this is all just what I call 'second generation' community health programming. True community health service delivery meets the identified needs of people in their communities and as the community defines the problem. This kind of programming is rare; this is why stumbling across a real community health program is such a treat.

In last week's OT Practice Laura Schmelzer of the University of Findlay describes a program to promote healthier lifestyle choices for children who need to attain a healthier weight. Her innovative program is deeply embedded in the concept of lifestyle redesign and wellness. More importantly, she describes the program development process that she went through - warts and all. This kind of honesty provides an incredible model for other therapists who might also think of developing community based program initiatives.

Great ideas aren't usually hatched in perfect form - they are born of the hard work that involves thoughtful planning and persistent effort. Throw some genuine caring into the mix too - Laura gets an 'A' across the board in all areas. This is an article that you should not let pass by.

Go read her article. Then read the Healthy People 2010 report. Get inspired, and get into the community!


Schmelzer, L. (2006 September 11). An occupation-based camp for healthier children. OT Practice, 18-23.

U. S. Department of Health and Human Services. (2002). Healthy people 2010: Understanding and improving health. (2nd ed.). Washington, DC: U. S. Government Printing Office.

Wednesday, September 13, 2006

Things I think about on tough days

This is a story about a little boy from Africa. His parents recently immigrated to the U.S. and he was only a little over a year old. L. contracted a bacterial infection, leading to a cold, leading to a systemic infection, all of which landed him in the pediatric intensive care unit.

It was a one in a million complication actually. Kids get bacterial infections all the time. The parents take them to doctors who prescribe medication, and modern medicine has taught us to expect that the infection will go away.

Every once in a while the medicines don't work. The bacterial strain multiplies, is immune to the medication, or who knows what. So L. was hospitalized and lying in the PICU as the infection ravaged his little body.

I believe at this early stage that the doctors did everything they could possibly do. The infection was particularly virulent though and his heart began to fail. And then his kidneys began to fail. In order to properly deliver medications he had arterial lines inserted. He also was on a ventilator to assist his breathing. As his kidneys were unable to excrete properly the excess fluid began building up in his tissues, and this further complicated his fragile heart that had to find a way to pump all of this excess volume through his system. In my mind this is where the heroic medical interventions take place: trying to restore some semblance of balance to a system that is completely out of kilter with itself. The doctors have to assess the relative acidity and alkalinity of the body, find some way to normalize it in the face of malfunctioning circulatory/respiratory and excretory systems, and there is the bacterial infection raging in the background that started it all. It probably is not as glamorous as heart surgery and is so much more difficult for people to appreciate the complexity of - but this takes real medical skill and heroism.

Weeks passed this way, with L. hanging desperately onto life. Sadly, the parents were nowhere to be found. In their culture it was typical to take a sick child to the hospital and leave him there until he was well again. The mother also was severely depressed - culture shock of a new home and the absence of her child caused her to attempt suicide several times. So L. remained in the hospital bed day after day, alone.

Ultimately, gangrene began to settle into his tissues. Once it starts it progresses quickly, and we stood by and watched L. lose parts of his fingers and toes. Then the skin over his hands and feet just started sloughing off altogether. At this point the hand surgeons and orthopedic specialists became involved and efforts were made to salvage his limbs. The parents remained peripherally involved, forbidding further amputations that could have helped stop the spread of gangrene. Days and weeks of limbo would pass with the doctors and parents in a stalemate over his care. Cultural differences almost killed this child, and no one seemed to know how to solve the problem.

I don't know if this is why they stopped seeing him everyday. I can't say that the orthopedic and hand doctors stopped caring - but they sure were indifferent. Doctors can get that way sometimes if you don't follow their plan. So the hand surgeons grafted his hands, wrapped them, and told everyone not to touch them until they gave permission. And the same was true for his feet.

Without intervention, hands and feet with open wounds that are left alone with so much swelling in the tissues will take on deformities. Open skin that is healing will heal in a fused state, turning a hand into something that looks like a catcher’s mitt: fingers will be flexed into the palm and the skin on the fingers will grow together so there are no spaces between them. The foot will drop down with the force of gravity and become stuck in a position with the toes pointing down like a ballerina.

I remembering having a confrontation with one of the hand surgeons, asking him what he thought was going to happen if we left L.'s fingers in this position of deformity without splinting them... and that perhaps he would want to be the one to work with this child after all the skin grafting was completed. I explained that L. was losing range of motion already because of the swelling and the loss of his fingertips, but it didn't matter. The MD felt hamstrung by the family, and he had established skin coverage as the only goal that could be agreed on. Function be damned; let the rehab people worry about that later, or maybe L. could have more surgery sometime in the future to undo the damage that was being done by adopting such a conservative plan.

So L.'s hands took on the deformities as I described, and they could barely still be identified as 'hands' when it was all done. Ultimately one leg was amputated at the knee, and part of the other foot. What was left of that foot was also grossly deformed, again because of conservative case management and inability of the team to bridge the cultural chasm between the 'system' and the family.

I worked with L. for months after that, making splints that would try to correct the deformities in his hands. There was so little muscle left in some of his fingers that pressure areas from splints were a real risk to exposing bone. I used a plastic elastomer, a rubbery material, custom formed in between what was left of individual digits, to achieve some degree of separation as the swelling resolved and the skin re-modeled itself. On one hand I was able to free one finger and the thumb from the rest of the hand, and on the other I was able to only partially free one thumb. Functionally, L. could use a crude pincer grasp with the one hand and a lateral pincer grasp with the other. And kids being kids, it was amazing and heartbreaking to see him function this way: trying to play with toys, trying to feed himself - as if that was the way his hands always were. No adult would have that much courage to try the way L. did.

A prosthetic limb was obtained for the amputated leg, but there were still problems with the other foot that was in such a deformed position. I made him a special foot splint that would allow him to bear some weight through that leg. It was quite a unique creation as he was unable to get the sole of his foot to the floor. The splint looked something like a shoe with a large heel on it. This was the only way to distribute weight along the foot and away from the toes.

Getting to know L. was a privilege. For weeks and months he was just a shell of a beautiful baby, lying in the PICU and unable to talk or move. All of our intervention at that point was comfort oriented: range of motion to his limbs, positioning in bed, stroking his hair and reading or singing to him. When he eventually cleared the infection and was taken off of the ventilator we got to see how special he truly was. Being just a baby, and having lost several months of opportunity for development due to the illness, he didn't verbalize much in the beginning - but his eyes told you everything. He developed an animated personality and watching him develop his vocalizations and beginnings of speech were amazing. He would cry and hate his prosthesis and splints, but he would hug you when you were done putting them on. Almost as if he knew you had to do it.

L. will grow up knowing that life is not easy. He will know struggle and even more pain because he will need more surgeries. But he has a deep understanding in his eyes, and he would deliver that understanding with a hug. The world could use a few more people like that in it, I have always thought.

Beyond the egotism of modern medicine, beyond the inflexibility of health care and educational systems, and beyond the anger that I express at it all from time to time, there are still people like L. that we all are supposed to help. On the difficult days, that is what I try to remember most.

Wednesday, September 06, 2006


I have spent some time thinking about the concept of transparency lately. This is one example of how it has come up recently -

I like to have parents sit in on my evaluations. I find that most children are not distracted by their parents at all. Very rarely I will have to ask a parent not to coach if we are doing a standardized test, but this is very uncommon. Having parents sit in on evaluations allows them to see what is being done and it enables them to be better advocates for their children. Parents who have seen occupational therapy evaluations are better able to discuss a child's needs at a CSE or CPSE meeting. Also, having a parent 'right there' allows me to interact with them as contextual behavioral issues come up and it also allows me to observe the nature of the parent-child interactions.

The one exception to this rule is that I generally don't like to have parents present in the room if I am doing the SIPT. I can't tell you how many parents have fallen asleep while watching this evaluation - it must be the most boring thing in the world to watch. So, if I am giving the SIPT I usually tell the parents to go out for a while and I bring them into the evaluation close to the end.

What are your experiences with having parents observe and participate in the evaluation process? Let us know!

Monday, August 21, 2006

Insurance companies and doing business in New York

Although I have a lot to say about health insurance and occupational therapy I will save it for another day. That is a topic that deserves several entries.

Instead, since people email me and tell me that they may be interested in starting their own private practices I thought that this 'other insurance' information would be interesting for people to read about.

In the last month I have had interesting interactions with my professional liability insurance provider, my general liability insurance provider, and now the NY State Department of Labor who administers the FUTA tax, also known as ‘unemployment insurance.’

I dutifully pay our professional liability (malpractice, etc.) each year and have never had a claim thank goodness. It is common for large contracts to require listing on the policy as an ‘additional insured.’ This is fine, but the underwriting department of the professional liability insurance company has strict rules about the technical wording of who is listed as the ‘additional insured.’ It took about five phone calls to haggle between the contract’s attorney and the insurance company before there was agreement on how the additional insured should be listed. It was quite a process.

For general liability, I received a letter from my insurer (who covers ‘slip and fall’ issues, fire, theft, etc.). Based on an alleged review of my website they have determined that I am at too high of a risk for them to insure. I never even knew that they reviewed websites and looked for reasons to terminate policies! They never asked me a single question, our business activities have not materially changed, we have never had a claim, and they have been our general liability insurer for this entire time. The best I can figure is that they think I am overdue for something? Do they actually apply statistics and probability theory to their decision making? This is quite disruptive because in addition to getting a new insurer I have to get additional insured written in for some purposes on this policy as well. Ugh.

Lastly, New York State’s unemployment system is in the red and it hasn’t paid back its loans from the federal government. So what happens when you don’t pay back your loans? Well if it is you personally you get whacked with a poor credit rating and you have to pay higher rates and higher fees. The same is true for New York State, except they happily pass the increased costs on to the employers. FUTA is something that every employer has to pay for the benefit of employees and the costs can’t be directly passed on. That means profits are lower, and employers are less able to hire. That means some people get laid off and have to USE unemployment insurance. Then the more that it is used the higher the state ratchets up the rate – it can go as high as 9.9%. Thanks for staying on top of your payments, New York.

Anyway, if you are going into private practice, these are some of the non-health insurance issues you will face. It is complicated, time consuming, costly, and you will have to learn things that you never imagined you would have to learn.

It is still worth it, in my opinion. I just like to rant about it once and a while.

Thursday, August 17, 2006

Lesion studies as a methodology for researching sensory processing disorders

OTs are trying to better understand the neurophysiological basis of sensory processing disorders. Several sites are conducting research using the Sensory Challenge Protocol . Preliminary studies (McIntosh, Miller, Shyu, & Hagerman, 1999) support the presence of a physiological basis of sensory modulation disorder (SMD), finding that electrodermal responses were larger in children with SMD, excepting those who were non-responders. Additionally, Schaaf, Miller, Sewell, & O'Keefe (2003) found that cardiac vagal tone index was significantly decreased for children who had identified sensory processing difficulties. These studies provide preliminary evidence that there is a physiological basis for SMD.

Another method of researching the nature of sensory processing is to look at sensory processing in people with known neurophysiological problems. Lesion studies are a classic method for understanding function and dysfunction of the human nervous system. Of course precautions must be taken when using lesion study methods: the presence of a lesion in a location may not represent the primary site of a nervous system function, despite the fact that actual function could be severely impacted at that lesion site. Circuit redundancy and multipath parallel processing can make lesion studies a little muddy.

Complex regional pain syndrome (CRPS) is a disorder characterized by chronic pain that is disproportionate to the trauma that caused the pain (NINDS, 2003). Sensory modulation disorders are identified as altered neurological thresholds to sensory information that impact on daily life functioning (Dunn, 1997). Although the exaggerated state of sympathetic arousal in people who have CRPS is not clinically identical to hyperarousal in people who have SMD, these two conditions may constitute a continuum of pathology that is reflective of sympathetic nervous system dysfunction. A more thorough understanding of these conditions, including their apparent similarities and the impact that they have on function, will provide information that can be useful when developing therapeutic interventions.

ABC Therapeutics is finishing up a small scale study that is looking at the Adolescent/Adult Sensory Profile test scores of adults with CRPS. This study will explore the sensory processing abilities and occupational performance of adults who have CRPS.

On another front, we are also completing some preliminary literature review on "Type T" personalities. We hope to use a similar design (as above) using the Adolescent Adult Sensory Profile to explore if there are measurable differences in test scores in adolescents who have this profile or those behavioral characteristics. Another interesting twist is to see if we can find a tool that has been used to measure what I am calling 'inverted-T' personalities. I am interested to see if we can find a tool that will behaviorally identify these people and then see how they self-rate on the Adolescelt Adult Sensory Profile.

Please feel free to contact me if anyone is interested in learning more about the work we are doing here on this topic.


Dunn, W. (1997). The impact of sensory processing abilities on the daily lives of young children and their families: A conceptual model. Infants and Young Children, 9, 23-35.

Farley, F. (1991). The Type T personality. Chapter in L.P. Lipsett & L.L Mitnick (eds), Self-regulatory behavior and risk taking: Causes and consequences. Norwood, NJ: Ablex Publishers.

McIntosh, D.N., Miller, L.J., Shyu, V., Hagerman, R.J. (1999). Sensory-modulation disruption, electrodermal responses, and functional behaviors. Developmental Medicine and Child Neurology, 41, 608-15.

National Institute for Neurological Disorders and Stroke (2003). Complex Regional Pain Syndrome (also called Reflex Sympathetic Dystrophy Syndrome) Fact Sheet. Retrieved May 14, 2004 from

Schaaf, R.C., Miller, L.J., Sewell, D., & O'Keefe, S. (2003). Children with disturbances in sensory processing: A pilot study examining the role of the parasympathetic nervous system. American Journal of Occupational Therapy, 57, 442-449.

Wednesday, August 09, 2006

More on the need for more rigorous evidence-based practice in pediatric OT

Today a colleague pointed out to me that there was such a thing as 'Sensory Stories.' During a conversation on the ABC Therapeutics discussion board she asked about 'Sensory Stories' and I thought she was talking about Carol Gray's Social Stories.

Turns out that some folks have tweaked the Social Story concept and are now marketing products. For more information on Sensory Stories you can buy them here or read information from the authors here. It seems that these are customizable stories that employ sensory-based strategies to help children learn to cope with hyper-responsivity to certain sensory information. In addition to the sensory strategies the authors suggest repetitive reading of the story, perhaps setting up a cognitive-behavioral script to help establish a coping routine to an upsetting situation.

The authors provide recommendations for how often the stories should be read, and make statements about their research - although this is all just weasel-worded - there is no published research on Sensory Stories - there isn't even much research yet on social stories (scroll to bottom of page of this link).

I was really hoping to find some reference to Carol Gray - even a tip of the hat, or perhaps a statement of permission to use the concept. I couldn't find anything. I am certain that Carol Gray does not need me watching her back, but not seeing the references to her original work kind of bothered me.

Of course the argument to be made is that Sensory Stories are different enough in concept that they should not be confused with Social Stories. But if I confuse them in concept, and automatically attribute the concept to Social Stories, isn't the question of intellectual property a valid question?

Besides all that - do we need another sensory-based intervention program out there that will make my phones ring off the hook - but never really conduct and publish the research to support that these ideas even work? Parents will hear about this. They will call and want us to implement these strategies. Sometimes they will work and sometimes they won't. When they don't work we will have angry parents who think we don't know how to implement the stories successfully. Then we will also receive ridicule from other professionals who will question why we make such bold statements about our interventions without having supporting research. Then, in the final link of this chain of events, I will have no response to the insurance company when they deny occupational therapy services for children because the interventions are still 'experimental.'

I am tired of the never ending stream of new interventions that are marketed heavily and never researched. Brain Gym, Therapeutic Listening, Wilbarger Protocol, etc., etc..

I volunteer my clinic to anyone who wants to conduct research on social stories, sensory stories, or chicken soup stories. Call the stories whatever you want. Just please lets do research before they become the latest craze on the money-making OT continuing education lecture circuit.

Tuesday, August 08, 2006

A book recommendation

This is a lot of information to get to a book recommendation at the end, but I hope the information along the way will be helpful.

In occupational therapy, context refers to a variety of interrelated conditions including cultural, physical, social, personal, spiritual, temporal, and virtual factors that influence performance (AOTA, 2002). Performance contexts are taken into consideration when determining function and dysfunction within an environment.

The concept of “contextual factors” was not explicitly stated in the occupational therapy literature until the profession adopted Uniform Terminology III (AOTA, 1994). This document included the earliest named references to contextual factors that occupational therapists consider. Specifically, it mentioned temporal aspects including chronological age, developmental stage of maturation, point of location in the life cycle, and disability status. Additionally, the definition of cultural contexts includes customs, beliefs, and activity patterns; although these contexts may be culturally transmitted they are personally acted on and could be classified under a broader scheme of personal contextual factors. Although other authors discussed these factors, prior to this time there was no cohesive set of principles that outlined occupational therapy’s domain of concern regarding context.

Winnie Dunn was Chairperson of the taskforce that developed UT-III and at the same time she was developing her Ecology of Human Performance model (Dunn, Brown, & McGuigan, 1994). This model was designed with the purpose of accounting for the influence of the environment on human performance because Dunn believed that there was a lack of consideration for complexities of context in occupational therapy. Under the assumption that “occupational therapy is most effective when it is imbedded in real life,” temporal and environmental contextual factors are identified that allow practitioners to interpret behavior and choose appropriate and meaningful therapeutic interventions. She stated that ecology (the interaction between person and environment) affects human behavior and performance, and that this performance can’t be understood outside of context. Most importantly, she stated that contextual factors include physical, social, and cultural elements, and are considered to be broader than environment as they also include the experiences of the person. Dunn’s specific statement about the individual’s phenomenological perspective on their own situation was germane to the AOTA’s uniform terminology document, and had a broad impact on how future occupational therapy theorists incorporated contextual factors.

Although I have outlined this before, I will repeat it here as it is ‘contextually appropriate’ to do so: some recent practice models explicitly identify the relationship between the individual, the occupation being performed, and the environment. The P-E-O model (Law, Cooper, Strong, Stewart, Rigby, & Letts, 1996) explicitly states that the behavior can’t be separated from its contextual influences. Additionally, this model re-introduced the importance of history-taking for establishing personal contextual relevance for goal setting. Similarly, the Lifestyle Performance Model (Velde & Fidler, 2002) takes a congruent approach by completely embracing phenomenology as being the only possible method for understanding the personal contextual relationships between an individual and the occupations that they engage in.

How has the profession operationalized contextual concepts? Occupational therapists generally intervene at the level of the individual, although there is some growing discussion about population-based interventions (Scaffa, 2001). Still, for occupational therapists, contextual study generally doesn’t move too high up the complexity scale in a linear general-systems theory framework. Occupational therapists (in practice) tend to consider broader concepts of social and cultural context as they impact the individual. There are some noteworthy exceptions to this pattern – namely Reilly (1974) and to some extent Wilcock (1998) – but then again these referenced books had more to do with grand ideas and a little less to do with street-level occupational therapy.

Here is an example of how OT has traditionally considered contextual factors: Occupations, by their very nature, are interpreted within the context of personal meaning. Without this saturation of meaning, occupations are reduced to simple tasks that are foreign. Hasselkus (2000) describes her experiences of feeling stripped of her occupations when being immersed in an unfamiliar culture with unfamiliar routines. Deprived of her familiar context, she began to question her own identity. She expresses that her ability to participate in even simple but familiar routines provided a grounding foundation for her other experiences. Contextual relevance imbues meaning into occupation and occupation-centered practice requires the consideration of context. Occupational therapists consider contextual relevance by adopting narrative-based approaches in addition to or in substitution for performance component/bottom-up intervention approaches. Occupational history, occupational storytelling, contextual observations, and service provision in naturalistic settings all provide opportunities for collecting data regarding contextual factors.

This makes me wonder – is there a model for operationalizing the grand ideas of Wilcock and Reilly? I have been recently spurred into this question by reading Guns, germs and steel: The fates of human societies (Diamond, 1997). You can also find a nice website here that apparently corresponds to a PBS series that I have not yet seen. Diamond’s argument is that historical context as shaped by geographic factors is useful for understanding the shaping of societies. If his argument has merit, it should be able to be twisted down to looking at how historical and geographic context impacts the shaping of an individual.

Interestingly, Blanche & Henny-Kohler (2000) started looking at issues of cultural geography directly as they relate to occupational therapy knowledge – but their work just begins to scratch the surface of this very large question. Even though the initial question is not answered, the follow-up question is “To what degree is knowledge of these contextual factors helpful in street-level occupational therapy practice?”

I know that this discussion can degrade into a debate of basic vs. applied inquiry – and I am really not convinced that the profession or the scientists have really gotten the issue straight yet. Specifically, why are most undergraduate degrees in occupational science and the graduate degrees in occupational therapy? Does anyone else beside me see that this may be turned on its head?

Anyway, I encourage people to think about these issues – and Diamond’s book will take your brain to some interesting places regarding broad historical context. Does it matter to the people in the street? Let me know what you think… and happy reading!


AOTA. (1994). Uniform terminology for occupational therapy, 3rd ed. American Journal of Occupational Therapy, 48, 1047-54.

AOTA. (2002). Occupational therapy practice framework: Domain and process. American Journal of Occupational Therapy, 56, 609-39.

Blanche, E.P. & Henny-Kohler, E. (2000). Philosophy, science, and ideology: A proposed relationship for occupational science and occupational therapy. Journal of Occupational Science, 2, 99-110.

Diamond, J. (1997). Guns, germs and steel: The fates of human societies. New York: W.W. Norton & Company.

Dunn, W., Brown, C., and McGuigan, A. (1994). The ecology of human performance: A framework for considering the impact of context. American Journal of Occupational Therapy, 48, 595-607.

Hasselkus, B.R. (2000). Habits of the heart. American Journal of Occupational Therapy, 54, 247-248.

Law, M., Cooper, B., Strong, S., Stewart, D., Rigby, P., & Letts, L. (1996). The Person-Environment-Occupation Model: A transactive approach to occupational performance. Canadian Journal of Occupational Therapy, 63, 9-23.

Reilly, M. (1974). Play as Exploratory Learning: A Study of Curiosity Behavior, Beverly Hills, CA: Sage.

Scaffa, M. (2001). Occupational therapy in community-based practice settings. Philadelphia: F.A. Davis

Velde, B., & Fidler, G. (2002). Lifestyle Performance: A model for engaging the power of occupation. Thorofare, NJ: SLACK, Inc.

Von Bertalanffy, L. (1968). General Systems Theory: A Critical Review. In W. Buckley (Ed.), Modern Systems Research for the Behavioral Scientist. Chicago: Aldine.

Wilcock, A.A. (1998). An occupational perspective of health. Thorofare, NJ: Slack, Inc.

Thursday, August 03, 2006

Book review: The curious incident of the dog in the night-time

The curious incident of the dog in the night-time.
M. Haddon. New York: Vintage.226 pp. $12.95.Paperback

In this mystery novel the protagonist narrates through his journey into awareness of adult relationships. The story is at times engrossingly accurate and at times painfully pedantic. Ironically, in a story about a protagonist who perhaps has Asperger’s Syndrome or some other form of high functioning autism I imagine that is supposed to be the point. Unfortunately, the story ultimately fails because the author can’t resolve the fact that the real ending is already known, despite the ‘mystery’ being revealed on page 120.

Christopher is an interesting character and his quirkiness is probably what drew critics to praise the book. I don’t imagine that the critics have ever met someone like the protagonist, so his ‘differences’ are captivating enough to keep an uninformed reader glued to the pages long enough to finish reading. Sadly, the author reinforces the disability-as-magic-power myth in order to achieve his goals. For the informed, the character typing, or perhaps stereotyping, underscores the real tragedy that the author never really explores.

This is not a coming-of-age story in any sense, despite some mimicry of the bildungsroman genre. The basic formula of a bildungsroman is that it is easily understood by people within that culture and time, where the kinds of opportunities presented to the protagonist were the same as the actual experiences of common people. In some sense the events are common – but the protagonist is uncommon. Christopher can never grow through the experience in the classic bildungsroman way; his disability impedes his growth. The author doesn’t provide a contrived ending – he just expresses Christopher’s tragically constricted perception that the world will right itself. I imagine that the collective readership is more than willing to accept Christopher’s fantasies, despite the previously asserted facts of his requirement for guardianship and supervision.

One could argue that an artist simply paints a picture and can’t be held responsible for how others can come to view the work. I still think that Haddon should have been more responsible. Christopher is not a super-hero in this novel, although I understand how he has been misunderstood as one. The reality of this story does not lend itself to the comic-book ending that Christopher perceives and the reader wants to believe. I am a little disappointed that the author didn’t see how that might happen.

Haddon’s error, then, is in sin of omission. The story doesn’t really end so happily. The real story is that the family is broken, and the imperfect adults in the novel are left struggling to define and redefine their relationships and roles in the wake of raising a child who has a disability. The real story is also that given the nature and degree of the portrayal of Christopher’s disability, it is not so certain that he will be able to accomplish his dreams. Art does not imitate life in this book. This omitted fact is the real tragedy.