Sunday, November 27, 2005

prayer as occupation

I saw my first patient 20 years ago, and at that time the debate was raging over whether we should call the people who we work with 'patients' or 'clients.' I don't know that there was ever any 'official' decision made, but now we see patients, clients, students, workers, etc. I usually use the term patient, which is mostly out of habit. When you work in a single field for 20 years you can be accused of being 'old school' and old habits die hard.

But I didn't choose to write tonight about semantics.

I was thinking back to my first patient contact 20 years ago because that is when I learned about people who have cancer. When I am struck squarely between the eyes with a proverbial baseball bat I automatically start working from the beginning of my experience to remember what I have done before, seen before, experienced before. My experience is my crutch, like an old man's walking stick.

A former patient's mom emailed me today and told me that the child had cancer. This is in addition to the developmental delays that the family already is working around. She asked me to pray.

***

Sometimes in my life as an OT I have had people call me and ask me to write a report, or to attend a meeting, or to help obtain a wheelchair. I have had countless small requests, most of which are relatively do-able. But it was in my first experience as an OT that a patient asked me to pray. I can recall praying a bunch of times without being asked, but I think I have only been asked a few times.

Kent Tigges, who was my mentor, told me when I was just 19 years old that it would be very hard to be a good OT and to be agnostic or atheistic at the same time. I had no idea why he said that at the time and I am not sure I had the ability to believe him when he told me this, but I know he was absolutely correct. Kent treated life as though it was OT though, so I don't know if he meant what he said in a strictly or traditionally therapeutic context.

When I was 19 he told me to be ready for the time that a patient asks me the hard questions, like "Why is God doing this?" or "Is my illness some kind of punishment?" or "Do you think I will go to heaven?" About two weeks after he told me to think about my answers to these questions one of his patients asked him directly "Why is God doing this to me? I was a good person and I lived my whole life trying to do the right things. I went to church and I loved my family. Why is this happening to me?" If the patient didn't have cancer I would have thought that I had been set up - but the questions were too contextually appropriate to have been a set up. I will never forget Tigges' answer which flowed as smoothly as anything I have ever heard in my life. I thought for sure that I was about to see the Master in action, but instead he said, "You know, my colleague Chris and I were just talking about this very subject, and I know that he is well prepared to give you an answer that I promise will help." Then he smiled at me, and left me to the discussion.

***

I still don't know why things happen, and I especially don't know why they happen to certain people. I don't know. I reached back into 20 year old journals tonight to find an impossible answer to this problem. I didn't have answers then and my mentor did not have answers either. We went into scores of homes to work with people in a hospice program and we never found an answer. After his daughter's funeral I sat with him and we cried together and I know at that moment that we didn't have answers. After I received a phone call telling me that he died I sat in stunned silence, waiting for the Universe to provide an answer. I am still waiting.

***

A primary motivation for my writing is because I wait in anticipation of the person who will read my writing and tell me, "Oh, Chris - don't you understand? This happened because..."

***

"Prayer helps," someone told me once. When there is so much swirling about it seems like such a simple thing to do. In my small and frail human mind I sometimes wish that people would ask more of me. But I am beginning to understand that perhaps it is the greatest request of all. Paradoxically it is the simplest and greatest thing to be asked to do. Kent knew this, and that is why he told me that a good OT would have a hard time being an agnostic or atheist.

***

An agnostic or atheistic person might have a hard time coming up with an aswer to that request, but Kent prepared me well. Of course I will pray. I'll ask anyone reading this to pray too. I don't know why sad or bad things happen, but I know that the way we respond to them matters. We can give in to despair or we can open ourselves to faith and hope. Of course I will pray, because faith and hope are my best responses, my best choices, and my best answers to situations that are impossible to understand.

Tuesday, November 22, 2005

normal


All I do is write, but not here. This evening I cranked out about 18 pages worth of evaluations. That is single spaced technical reporting. My hands are numb.

I've been spending a little time thinking about what I am choosing to write lately and what I am not choosing to write. There is a story I needed to record - and I will only put the snippet here for memory-jogging purposes, but there was so much behind it.

I have been considering the nature of disability, particularly as it relates to children. It is hard to be disabled as a child because so many people do so many things for you ANYWAY. The standards are just not the same as with adults.

Example: if an adult has a stroke and can't dress themselves, they are considered disabled. If a child has a stroke and can't dress themselves, the parent provides care. Because children are children, and because parents do what they do, the concept of disability is different with kids.

Hmmm.

Well a parent asked me an interesting question the other day. She brought her child to me, asking me for help in determining the nature of the problem for her daughter who was failing in school - except that the school is just pushing her through to the next grade. The child has severe social problems and has some severe perceptual difficulties, but you wouldn't know this by reading the school reports that indicate there is no problem. Mom asked me, "Maybe there really is nothing wrong. Is that possible? Maybe she really is just fine?"

I thought for a moment and I considered the thousand or so kids who had similar problems but whose parents don't do anything. I also considered the kids in inner city areas where there are no resources and no advocates to see that any programs are developed. I also considered the kids in the 1900s who couldn't learn so they dropped out of school and went to work in the factories.

There is a normative curve of function to consider. Someone has to be low average, or even below average. This is dictated by simple statistics.

This leads to the real answer: Your child is only as disabled as they are unable to reach toward your greater aspirations for them, assuming that those aspirations fall at least minimally within the realm of reasonable expectations.

Is this an accurate statement?

Saturday, November 19, 2005

96 hours

I saw a posting on my discussion forums from a previous student; she was talking about her experiences working in pediatric critical care. I am sure that she does an excellent job; she was a very competent student.

I am still recovering from my pediatric critical care experience. Here's a story that is stuck in my mind, despite it happening nearly ten years ago.

***

Transference is an old Freudian term that refers to the unconscious redirection of feelings. I didn't know Mandy for very long, but I felt that I loved her the moment that I walked into her room. This little girl was just six years old, beautiful and blonde - she could have been my daughter. So when I saw her I felt love for her.

When I walked into Mandy's room I also felt an immediate sense of deep and profound sadness. She was lying still in the bed, eyes defocused toward the ceiling, and not responding to anything. In a corner of the room I saw a man who I imagined was her father. His eyes were just as distant as her eyes were and I nodded quietly to him, smiled awkwardly, and then began reading her chart.

Reading a medical chart of a child who is in an intensive care unit is like reading a horror novel - except that the reminder of reality is right in front of you as you read. From the chart I learned that she had just been admitted the previous evening and that she had "severe encephalopathy secondary to warm water immersion and anoxia." In simple terms, she was in the bathtub, unsupervised, and she somehow slipped underneath the water. Her mother, with whom she lived (as the parents were divorced) had been leaving her alone to take a bath for at least a year. Mandy was growing up, was becoming independent, and didn't seem to require the same kind of intense supervision that most people agree younger children require. So, it did not seem negligent to the mother to leave her on her own for taking a bath. The mother was a good parent and she loved Mandy with all her heart. She just never thought that an accident could happen.

That is the problem, though. No one can ever anticipate when something bad will happen. It is impossible to say what happened to Mandy in the tub. Perhaps she hit her head and slipped. Maybe she was playing and trying to hold her breath under water. But at some point the mom noticed that Mandy was taking a long time in the tub, and to this day I can't imagine the terror she experienced when she found her child face up and underwater in the bathtub. Emergency personnel were called and Mandy was resuscitated - and now she was in the pediatric ICU.

The chart indicated that an MRI was completed which is a test that provides a detailed picture of her brain. Mandy had little punctate lesions all throughout her brain, at every level. Clinically, she was in deep coma, unresponsive to even painful stimuli, and given the severity of the damage it was not likely that she would be able to recover.

The doctors wanted therapies to provide comfort care including proper positioning and range of motion. Also, not knowing what the decisions of the parents would be regarding further resuscitation orders they wanted her to be treated aggressively to prevent muscle contractures. This may seem like a small issue when a child is so acutely ill in other respects, but the ICU doctors were good in that they had developed long term vision and they knew that future problems would occur if proper preventative care was not provided from the outset.

The brain works as a large command and control center that not only coordinates movement and speech and thought, but it also keeps all kinds of ‘primitive’ reflexes under control. Take away the ‘higher’ brain functions and you will find ‘primitive’ reflexes strong at work. The primitive reflexes in Mandy’s brain were causing her body to go stiff and straight in her arms, legs, and spine; the medical term for this is decerebrate positioning. This is the kind of positioning that I was to work against, just in case the parents decided to approve of extraordinary measures to keep Mandy alive, such as a tracheostomy, a ventilator for breathing, and a feeding tube.

Underneath the neatly folded blankets I couldn’t see Mandy’s body at all. I just saw her beautiful little face, her hair brushed neatly and falling around her head and shoulders. I introduced myself to the man who did identify himself as her father. I don’t know if he understood what I told him or if he even was able to pay attention to anything I said. His eyes never betrayed that he even recognized my presence. Underneath the blankets I found direct evidence of what was described in the medical chart: Mandy was posturing stiffly into extension and it was very difficult to bend and move her limbs. I told her dad that I would be down a couple times a day to try and move and reposition her, and to teach him to do this as well.

Over the next four days I saw Mandy several times a day. I saw her father also; he had the same plaid shirt, jeans, and work boots that he had on the first time that I met him. Mandy’s mom never came to see her – she was so overcome with her own guilt and her own grief over what happened that she had to be hospitalized. When I saw Mandy I would always talk to her as I attempted to move her. On the second day I asked her father if she liked to be sung to, and he said yes, so I would sing her a different song each time I saw her. I remember that she seemed to relax most when I sang Thunder Road, a Bruce Springsteen song.

**
On the second day the father would stand next to me as I tried to make his daughter comfortable. I would massage her stiff muscles, gently try to move her joints, and move her from side to side so that she would be more comfortable. It was such a small intervention, really. Mandy’s brain was devastatingly damaged, and I was massaging her muscles, singing to her, and telling her how pretty she was as I brushed her hair away from her face. This is the futility of Sisyphus. Or the hopelessness of Prometheus. The feeling is just beyond words or comparison.

***
On the third day I was again completing my care of Mandy, but her father didn’t want to come and stand by her. He was sobbing, gently, but asked that I still work with Mandy. “Don’t mind me,” I remember him saying, and I remember fighting back my own tears as I tried to move Mandy’s arms and legs. Although she was just a child and only had the muscles of a child, this does not adequately explain how tight muscles can get when the brain is damaged. On this third day I could not bend Mandy’s elbows or knees at all; her muscles were rippling underneath her skin, contracting powerfully to make her as stiff and unbendable as steel.

Stress can cause your perceptions to alter and can make your thinking unclear. I remember thinking to myself, “If only I could get her arms and legs to bend - ” as if somehow that would make any difference. As I tried to help her relax and tried to get her limbs to bend and tried to make her more comfortable in the bed, she started to cry. Not audibly. She just had tears in her eyes, rolling down her cheeks. Her eyes were still defocused, staring blankly toward heaven, she was just as unresponsive as ever, but that day she cried.

Panicking, and thinking that perhaps I had hurt her, I remember snapping clearly back to my senses. I remember saying to myself, “Dear God, what am I trying to do?” I gently wiped her eyes, sang to her, and just held her hand. “I’m so sorry, Mandy,” I said quietly to her, not even knowing what I was apologizing for.

****
On the fourth day Mandy’s chart said that the parents signed a ‘do not resuscitate order,’ which precluded the doctors from performing any excessive or extraordinary lifesaving procedures. Now they were waiting for her to die.

Her breathing had changed noticeably. The medical term for this is Cheyne-Stokes respirations. She would breathe rapidly for a time, and then stop breathing, and then have another period of rapid and deep breathing. Each time we would wait for her to start breathing again, and I remember feeling my own pulse race in anticipation of her next breath. This cycle repeated for much of the morning of the fourth day.

In the afternoon the staff who cared for Mandy had all gathered, as it was evident that she was dying. We stayed with the father and stayed with Mandy. And we all held each other. As her breathing became even more episodic the nurses took away the monitors and wires. Then, after a period of not breathing, and my own heart pounding in my ears waiting for her next breath, Mandy didn’t breathe again.

Wednesday, November 16, 2005

On string theory and muddy paws


I mentioned a couple months ago that I would be an astrophysicist if I wasn't currently practicing as an OT. Actually, I lack the mathematical ability to do this kind of work seriously. Despite this, in my ongoing attempts to enlighten myself on the nature of the universe I went and listened to a Brian Greene lecture this evening.

This actually does have something to do with OT. This has to do with our choice of occupations and the impact that it has on our world-view.

I have a General Systems Theory Knowledge Map hanging on the wall of my office. I keep it there to remind me to think expansively, but the bottom end of the Knowledge Map is a little outdated - I think it lists atoms or perhaps just quarks. Tonight the lecture was about strings, of course. It was interesting, but perhaps not as technical as I was hoping to hear.

Actually the most important part of the evening to me was listening to the questions that people asked him. There were some very hostile questions, although they were asked politely. One had to do with the existence of God. Another had to do with the theoretical presence of a 'Love' force (in addition to electromagnetics).

Some people don't want to hear that life as we know it can be explained by wave structure. Perhaps it really can't - and I think that is the point. The audience's questions can't be broken down into psychophysiological correlates of string resonance. This is the disconnect that I am not sure the Academy understands. Physics is a closed system science, dependent on a clockworks-type of model in order for it to work. People's lives are too interdependent on other systems to be understood at the clockwork level.

General and dynamic systems theory states that the whole can't be explained simply as a sum of its parts. The behavior of electrons passing through my computer is governed by quantum laws, but I am typing this to you and you understand it because of linguistics and communication theory. It is a little arrogant to think otherwise. Smart people should know enough to reject models that embrace reductionistic models of upward causation.

We are still struggling with everyday problems in our society and people just don't draw connections between science and everyday living. Here is an illustation: on my way out of the lecture I was talking to my son when I got a cell phone call from home. My son and I were discussing the nature of the universe and the phone call was from my family who is tired of this long and wet Fall and the way that the dog is getting mud all over the kitchen. No one wants to clean up after the dog constantly, and it has been a burden recently. So, they want to put boots on the dog. It's a funny thought, actually - and the timing of the discussion made it even more funny.

This is the disconnect between string theory and muddy paws. People just have too many other problems to deal with, and it is frightening to people when they hear scientists speak so boldly about Unifying Theories of Everything.

We are just not ready yet, and perhaps our Science has outpaced our ability to cope. I predict that we may be ready for string theory when Jerry Springer is no longer an option on the television. Life is complicated enough with people trying to live it in three dimenions - we just aren't ready for any more.

Tuesday, November 15, 2005

overheard


I watched the young boy approach the table at the farmer's market. He was only 8 I figured. Maybe 9. His hands reached immediately for a ball on the table. It was oddly shaped so that as it 'rolled' it would go in unpredictable directions.

The young boy looked at the 75 cent price tag and dug deep into his pocket. He smiled, excitedly: he had enough money. Still, he seemed to pause. I imagined that he was trying to decide. Is this what he would spend his money on?

"My son and I spent hours and hours playing with that ball," announced an adult voice from across the table. "We would play with that ball for hours. It was the most fun we ever had."

I don't know how to convey the true intent of this man's statements. I am sure that I heard something very different than the little boy. I heard a professional farmer's market pitch-man, trying to eke out another sale. The little boy's eyes lit up. This statement made his decision easy. He quickly handed over the money.

Running to the next table I saw him hold the ball up to his father. "Look what I got! And it was only 75 cents! That man said that he and his son had hours of fun playing with it."

The father looked down at the overpriced bauble and yelled back to the salesperson out loud, "If the damn thing was so much fun I wonder why he would ever want to sell it."

The father turned away, consumed in pursuing his own interests. The salesperson at the table shrugged the encounter off.

The little boy stood in the middle of the two, holding his ball.

Sunday, November 13, 2005

Reflections on the occupation of collecting


In an ongoing attempt to develop a (hopefully expanding) understanding of childhood occupations, I offer this self-reflective entry. In it I can find the dynamics of interpersonal interaction, the rule-making and gamesmanship that hopefully leads to participatory democratic thought and action, and of course meaning that transcends time. All interesting, when you consider it was just a childhood collection.

***

Young children enjoy collecting things. Bugs. Baseball cards. Comic books. Rocks. Lincoln pennies. My brother and I collected bottle caps.

I am thinking that Gary, one of my earliest school friends, was the first one to have a bottle cap collection. His Dad worked for the government (we weren't allowed to know what he did - and to this day I still don't know) and he went to odd and exotic places around the world. Their living room was decorated in a Japanese motif - and Gary's Dad brought back bottle caps from Japanese beer bottles. That got us all intrigued.

As ten year old kids we would comb the streets, parking lots, teenage Friday night hangouts, and anywhere else that might provide us with a yield of new and different bottle caps that no one else had.

We called these locations "spots," as in 'I found the most awesome "spot". These "spots" were highly guarded secrets and we would spy on each other to find out where the other person's "spots" were. Deception was frequently used - once Brian and Dave told me that their new "spot" was far far away, and they would disappear from the neighborhood for hours, presumably on their bikes on a trip to their "spot." Turns out that their "spot" was at the deli around the corner that used to dump their broken beer shipments in back of the store.

The bottle cap collections persisted, and the competition for 'biggest' collection was infamous. There were many controversies as well - for example - many states taxed beer products differently, and the breweries would print the name of the state on the side of the cap. If the top of the cap looked the same, but there was a different state name printed on the side of the cap, should that count as a different kind of cap?? This is the stuff of long and heated discussions that went on for years.

We wrote letters to the breweries and they were usually very willing to send samples of their caps. We also used to go to a local German deli owner who imported many unique and rare beers and buy him a beer for his lunch each day - with the contingency that he would deliver us the cap from the beer. We would search people's attics and basements - hoping to find some long forgotten case of beer. The unique finds were legendary: the ancient Blatz beer and cap that I found hidden at a Girl Scout Camp, the cone top caps that Dave found at an antique dealer, The old Reingold and Genesee caps that we found in abandoned buildings on the waterfront.

On January 15, 1978 my brother and I merged our collections together, squashing all competition and creating the largest collection of all our friends. These were the conditions (I still have the original contract):

1. each will have an equal say in every aspect dealing with the caps.

2. trade dealing with single, original, one-of-a-kind caps must be approved by both of us, however, either may trade doubles at will.

3. both of us must share expenses equally.

4. differences must be settled by a neutral party.

5. amendments may be advanced with both of our approval.

Today, I have the caps stored in a box neatly lined with silica to prevent moisture and condensation. At the peak of the collection we had over 1500 different bottle caps, which was the largest collection that was recorded by the East Coast Breweriania Association at that time. Not a bad feat for a couple of kids.

It is such a silly thing, really. But it was important to me while I was growing up. And if you want to know about me, you kind of have to know about that bottle cap collection.

Sunday, November 06, 2005

The Slow March of Change

I provided expert testimony last week in a state Supreme Court case. A municipality is suing a family because they keep three goats and a llama on their property for purposes of 'animal-assisted therapy' for their child who has autism. The family purchased the property (previously used as a horse farm) thinking that they could keep these animals on the premises. It turns out that the land was re-zoned and the previous owner's animals were 'grandfathered' but that the land use restriction came into effect when the property was sold (unbeknownst to the family who has the autistic child). They had these animals for over ten years and the child does derive some benefit from interacting with them.

My testimony centered around the child's condition and the use of animals in a therapeutic context. The child interacts appropriately with the animals, enjoys 'pushing' fights with the goats, and it is one of the few purposeful activities that sustains his attention. The community is a farming community, although the town is growing and that apparently led to the re-zoning. Although the new zoning law restricts farm animals, they have over two acres of land and the neighboring property is another horse farm.

The policy issue at stake is the Fair Housing Act, which is a federal statute designed to prevent discrimination in housing for people who have disabilities. It is most commonly referenced with regard to group homes but it applies broadly. The Act is not intended to trump local housing law, but is meant as broad policy guidance for local zoning laws. For more information on the act please see http://www.hud.gov/offices/fheo/FHLaws/yourrights.cfm

In keeping with my earlier rant on disability rights, is it a fact that the policy of non discrimination against people who have disabilities has failed reflected in the presence of an HUD complaint process? Do policies fail when we need to have another branch of government (judicial) interpret the laws that were written to support the original policy?

Discrimination under the FHA includes "a refusal to make reasonable accommodations in rules, policies, practices, or services, when such accommodations may be necessary to afford [a person with a disability] an equal opportunity to use and enjoy a dwelling." 42 U.S.C. § 3604(f)(3)(B).

So if our civil right policies work, why did I need to testify in court? Policy making and 'pace of change' is described well in the Birkland text (pp 46-49) 'An Introduction to the Policy Process.' In this context I don't know if it is fair to say that the civil rights policies 'failed;' rather they just evolve at a VERY SLOW PACE!

I am certain that the municipality views this all very differently. It will be interesting to see what happens with this case.

Wednesday, November 02, 2005

New York's Disgrace, 30+ years later


Willowbrook State School was the pride of Governor Rockefeller's Mental Hygiene program. In the early 1960s it was the largest residential facility in the nation for people with mental retardation. Willowbrook Director Dr. Berman wrote in the Staten Island Advance that Willowbrook had "approximately 6000 patients, more than 1800 employees, and 24 patient buildings..." Governor Rockefeller developed the 'New York State Institute for Research in Mental Deficiency' on the Willowbrook grounds.

The 'gem' of Willowbrook quickly lost its luster. In 1965 US Senator Robert Kennedy toured the facility and stated that "Particularly at Willowbrook we have a situation that borders on a snake pit and the children live in filth. Many of our fellow citizens are suffering because of the lack of attention, lack of imagination, and lack of adequate manpower. There's very little future for the children or those in this institution..."

People who had developmental disabilities were warehoused in the Willowbrook State School on Staten Island in NY. Conditions were so poor that residents were often unclothed in large dayrooms devoid of stimulation. Urine and feces were smeared on the walls, there was terrible overcrowding, and very little programming was offered to the residents. Geraldo Rivera's news story heightened public awareness and generated dialogue at the time that a lawsuit was filed.

In 1972 NY State Senator William Conklin wrote a letter to the NY Times. He documented problems in resource allocation, indicating that the Department of Mental Hygiene spent almost 800% more on mental health than on mental retardation.

The Willowbrook Consent Decree is a result of court action begun in 1972. A parent advocate group, with the assistance of public interest law groups, filed a massive civil rights lawsuit against Governor Nelson Rockefeller and Mental Hygiene Commissioner Alan Miller and other state bureaucrats who were responsible for the facility. Governor Carey signed the decree in 1975 and this action began a process to attempt to humanize the living conditions of people who had developmental disabilities.

The decree guaranteed a right to treatment for members of the Willowbrook class and began a national movement to improve the care of people with developmental disabilities. The Department of Mental Hygiene was reorganized, the Office of Mental Retardation and Developmental Disabilities was born, new standards of care were developed, and Willowbrook was ultimately closed in 1987.

There was a lot of fanfare and self-congratulation by the bureaucrats at the time. Today is is difficult to find resources about this story anywhere on the web. Many newly-trained health care professionals have never heard of Willowbrook.

Time marches on. The facility has been closed for almost 20 years, and many of the members of the Willowbrook class are getting older or have died. I believe that NY State should publish a comprehensive online history of the Willowbrook facility. All health professionals should be educated on the case. It is imperative that current and future policy be driven from a recollection of the Willowbrook case. It is too dangerous to let the memory fade.

Willowbrook is barely a footnote on the NY State OMRDD webpage. That is a disgrace and it must be corrected. People must not forget what should be driving policy. It was a shameful period in our history, but we should be equally ashamed to be hiding it.