A Few Bricks Shy of a Yellow Brick Road
The story of a journey of hope and healing in the land of Autism
While the story is true, the family names have been altered for privacy’s sake.
MEETING A MIRACLE
(A Few Bricks Shy…)
The day that I first saw JR, I did not realize that I was looking at a walking, talking miracle.
When JR shyly walked into my office, he did not seem to be much different than the majority of the neurodevelopmentally-impaired children who pass through my practice for workups and remediation. As I greeted him, my first judgment was “A bit of motor overflow”. But when I saw the video footage which had been taken four years earlier, just after his arrival in Pittsburgh, I was stunned. That was the moment that I began to actually understand the magnitude of the miracle that has been worked.
I had not seen that many autistic children up to that point-they rarely get outside the mainstream medical machinery-but surely this was not the same child? The heavily-medicated wild-child in the video would have been a sure bet to be in institutional care four years later. I would have laid odds on this. And yet here he was, quietly standing by his mother while she introduced us. JR shook my hand. His slight rocking was not a compulsive act, it was just childlike nervousness. He was medication-free and had been so for over two years, his mother told me.
I had given his mother, Diane, a checklist of possible symptoms to complete, and JR’s profile portrayed a child with many perceptual and sensorimotor valleys. Could we fill in the holes? JR was here for yet another assessment in his young life. Could the university-researched and proven program I had been now using for almost thirty years help him on to the next level of his recovery? I assured his mother that we would try to make this a realistic prediction.
This would never have been thinkable with the child in the video. But the child I was testing was a reborn child, birthed through the love and commitment and the long hours of labor of a mother who would not let her child enter the world of discarded children. This woman, and the man who loved both mother and child, had brought the boy this far. Love has a resurrection power. I know this, I saw it standing before me in Pokemon sneakers.
I was ready to try to help them go even farther. The tests showed much sensorimotor work to be done, but no insurmountable obstacles. We started the program, and JR began and continues to progress and grow through what we are doing, and through the love of his family. The following is my part of that story.
THE MAKING OF AN OPTIMISTIC OPTOMETRIST
(A Different Dorothy in Kansas)
If a newborn brain can be likened to Kansas, and the full development of a brain to Oz, then Life and Learning are a Yellow Brick Road that connects the two. The road is not smooth nor particularly easy. It winds over hills and dales, through patches and fields of poppies, harassed by flying monkeys and rotten apples. It has potholes and missing bricks. We may get slowed down, detoured, and even stopped in traffic. Bridges may be out and the weather (our emotional environment) can slow us down or cause an accident with fog, ice, snow, sleet, or standing water.
My share of the story of JR, this autistic boy who, with his family’s support and efforts in helping him to repair his pathway as he is traveling a damaged road, causes me to reflect back upon my very own journey on a (sort of) Yellow Brick Road, a short story about a long birthing….
Chicago is not Oz. It isn’t even Kansas. And I’m certainly not Dorothy, but I have chosen to travel my own Yellow Brick Road to an Oz of my hope and dreams.
[Why will I keep referring to the Wizard of Oz? Well, using the well-known story of Oz and Kansas and all its inhabitants seems to be a helpful metaphor for sharing my story about how I came to meet and begin to help a new phase of JR’s healing from his autism.]
Another way of looking at The Yellow Brick Road is as our life’s journey. It is filled with perils and bad guys, promises of hope and good fortune, and everything in between. Each of has a “Kansas” that is metaphorically a time of foundation-building. It’s a time of unexamined teachings, of loading up supplies and knowledge necessary for traveling on the Yellow Brick Road. We learn the “Thou Shalt’s” and the “Thou Shalt Nots” of life there.
I was a babe in the woods in Chicago. A Dorothy on her way to Oz. All the characters were there – just in slightly different shapes and forms, from the caring parental figures, to nurturing wizards, to the stern, power-wielding authoritarians. This was the seed-bed of my Kansas, my training ground as a professional. Kansas really isn’t bad, but Kansas is never, ever Oz.
As a student optometrist, I was learning the basics of my profession. It was there in Chicago that I learned about eyes and lenses and visual therapy, and I caught a glimpse of Oz.
Dr. Leo Manas was the head of visual therapy department at the Illinois College of Optometry during the 60’s. When Dr. Manas announced that as part of an experiment, ten brain-damaged children would be coming to our clinic for visual therapy, it made me very uncomfortable. You see, in my day, brain-damaged, retarded children were squirreled away by families so that you may have heard about them, but you certainly never saw them. The object of the study was to see if any changes could be effected in these children’s conditions. My comfort zone might be violated, I worried. I felt some comfort that I had only a one-in-seven chance of being assigned to one of these children. Yet in the way that small incidents in our lives can have life-long, providential impact on the course of our life, I was one of those one-in-seven who was assigned a child.
Sandy C. was African-American; I am Caucasian. She had been labeled retarded (the word used in those days); I was a very young, arrogant, somewhat-bigoted optometry student. She was damaged goods, the way that I saw it at first, an unfortunate burden that nobody could do anything about.
She changed my life while I unwittingly changed hers.
Sandy was nine, a slight, dark, frail girl with darting eyes and a quiet air. I was the intern in clinic whites with Buddy Holly glasses. We made a strange-looking pair as we walked through the optometry clinic: Mutt and Jeff, Salt and Pepper.
She was from a poor inner city neighborhood; I was from a middle-class steelworkers’ bedroom community. I had only known two African-American individuals in my entire public school career, and there were only two in my optometry school. My knowledge of people of color was limited because of these things. I knew nothing about them, let alone people of any color whose brains were not operating fully. It all made me doubly uncomfortable.
I did not know quite what I was supposed to do with her, and received only vague treatment plan suggestions. When a grand new science is starting, people-even experts-often do not know exactly how to proceed. The professionals are reduced to empirical experimenting at those times. With Sandy, I did basic visual therapy routines: Rotations, Fixations, Accommodative Rock. We did Strauss-Kephart motor activities (using jumping boards, walking rails, balance boards, played at chalkboard work, and others). Together, we did Doman-Delecato cross-crawling. We built patterns with geometric blocks. We beeped patterns at each other with a Morse Code-like buzzer board and tapped out xylophone patterns. The level of our frustration with each other increased at first because of her limited ability to respond. Remarkably (to me) Sandy caught on to little bits of the activities. Like an inch-worm crawling, we began to make progress by fits and starts.
I do not have data for you to wonder at or for you to criticize. I do not remember what it was that made any bright-flash breakthrough. It’s just that as time progressed, I saw something in her behavior, in her responses, that convinced me that she was now at a level far beyond the fitful responses with which we had started the course those eighteen weeks earlier. A more attentive Sandy was able to listen better. She conversed with me at a more normal child-like level. She seemed more confident, more poised. She was far from normal but her mother was grateful beyond words. This healing process left me with a sense of accomplishment and wonder at the miracle as well.
Optometry embraced many study areas in those days: ocular and human anatomy, physiology, and pathology, lens theory, mechanical optics of lenses and contact lenses, and visual therapy for binocular vision problems (like strabismus and amblyopia – lazy eye). But what I saw happen with Sandy was a new dimension for our profession. I was certain that Sandy’s brain had changed in some previously unknown way. What I failed to recognize was the change in my soul that had occurred at the same rate as Sandy’s changes. Bit by little bit, I gradually grew to know that I would never be happy as an optometrist simply fitting contact lenses or examining and prescribing for eyes.
I had touched fire, as someone once said, and not been burned. I had a glimpse of Oz, for I had changed a child’s life-and most importantly, I knew I had to do visual therapy; I had to be a part of healing people. Whatever expectations I had brought with me into my schooling were, they had not prepared me for this.
I slowly saw Dr. Manas’ theories become reality in my dealings with Sandy C. Yet I was too young, too caught up in my optometry studies, to deeply appreciate then what the following 35 years’ practice has affirmed: Brains do change. Yellow Brick Roads can be widened and repaired, obstacles overcome.
I imagined many arguments with Dr. Manas about the fruitlessness of what we were doing with Sandy until the very day that I saw for myself that Sandy had indeed changed. She had changed in very essential ways in response to the visual therapy, the motor skills development and the cognitive games that I had worked with her.
As the importance of this experience with Sandy began to sink in, I found myself truly committed to doing visual therapy (as I called it then) for the rest of my career. Visual Therapy called me, almost as if it were a ministry. I could make a real difference in people’s lives
Exactly how does one study an emerging science? Was this a science?
At first, it seemed that Dr. Manas’ ideas were out of keeping with what we were learning about the care and feeding of eyes in the rest of our classes. He believed that vision influenced the development of the brain. By altering visual inputs and the brain’s ability to process it, visual output would be altered, allowing better processing and learning that built upon those processes. That viewpoint alone was highly radical in the mainstream of the current thinking. Taken to its ultimate, it meant that Vision was essential to the proper development of intelligence and Mind.
[Vision, as I am using the word is here, is not the static quality of sight, but the dynamic process of using the sensory information to blend eye movement skills, focusing of the eyes, perceiving the world stereoscopically, and integration of the life perceptions into the mind and space-world of the individual. Ultimately, Vision-visual processing-is the first step, the beginning, for almost all of thinking.]
In most optometry schools and ophthalmology residency programs, the doctors are rigidly taught traditional, time-honored practices – examine the eyes and adjoining structures for disease, correct the refractive errors of nearsightedness, farsightedness and astigmatism. How to apply these corrections and adapt them to the person’s needs. Basic stuff. Necessary stuff.
My experience with Sandy C. gave me a glimpse of Oz. I became excited by the prospects, perhaps even empowered. I was a very convicted convert to visual and perceptual therapy. I thought (very Dorothy-like) that everyone could see the great power and value of changing children’s and adult’s vision and visual processing.
During my time in the college clinic, and later on in associate practice with an established doctor, I found dramatic responses from children with amblyopia (“lazy eye”), crossed eyes (tougher to train), and wall-eyes (very easy to train).
We were taught some new ideas about emerging, alternative methods which sounded promising. But as all new sciences emerge, much objective-based experimentation-clinical give-and-take-is needed to refine the methods, some good, some less than useful. This experimentation is necessary to demonstrate the repeatable value of the strategies.
ALTERNATIVE-FIE ON THEM!-THERAPIES
Not all clinical techniques-in fact, very few-can be quantified in randomized, controlled, double-blind studies at first. When we find that certain techniques repeatedly result in desired changes, we may then consider that we just might be dealing with science. It’s at that point that studies need to be considered and conducted.
So it was with a technique of cross-crawling and cross creeping. “Patterning” was another variation of it, developed and promoted by the Institutes for the Achievement of Human Potential (IAHP), founded by Drs. Doman and Delecato. Studies have not supported all of what they do at the IAHP. But I had used parts of patterning with Sandy, and she changed greatly in her social and communicative skills. Was it the patterning that was the “medicine” that worked? We can’t know for certain. There were too many other variables being employed at the same time: new lenses, visual therapy and some low-level perceptual-motor activities (both visual and auditory).
Even though I was not sure of whether the patterning was a useful and workable technique, I still took it into private practice with me at first. After just a few months, I dropped it from my therapy routines, because it had dubious results and was too time-consuming. Even though I was willing to consider it intellectually, I had a great deal of reluctance to impose it upon skeptical parents. I found it intriguing, but its theory was highly speculative and studies showed that its results were largely unpredictable, though very dramatic at times.
I didn’t realize how different this made me from my peers. Like the scenario of the Wizard of Oz, my personal Kansas was populated with far too many colleagues who were rigidly, legalistically satisfied with the way things were and had always been, who were content with what they knew about the Kansas of their science. Since they couldn’t or hadn’t seen the wonders of Oz for themselves, it was easy for them to dismiss it all. They could not see that there was a shining city beyond the horizon of their black and white world. What they already knew was good enough for them, and they could not understand why it was not enough for me. What was I to do? I couldn’t stay where I was, I had to move out of my mental Kansas, to strike out for Oz, and sadly, I felt, I was on my own.
We all have our Brick Roads, but we don’t all have an Oz. Far too many people keep their eyes focused on their private Kansas – and that’s not bad, it’s just…well, you know…Kansas. Please don’t get me wrong. The Kansases of life really are solid, worthy bases to work from. Kansas has hard workers and solid citizens, and some of that is necessary for life.
However, there are a lot of brick roads that never get out of Kansas. The roads just meander all over the state, and people are born and they die in Kansas, never having glimpsed Oz because they never look beyond the (often self-made) boundaries. There’s no intended condemnation of Kansans, I just have a longing hope in my heart, that people could see for themselves the Oz I saw in Sandy C., the way her brain had changed, and many others like her, since those days in Chicago.
But why? Why does vision therapy change these children’s – and adults – brains? Is it scientific?
I was not prepared for the storm over alternative therapies which existed just beyond the border. I got caught up in a storm that twisted my Kansas-way of thinking. And the storm almost sunk me and crushed me beneath what was left of my fragile house.
(Wizards in Oz)
My journey on my own Yellow Brick Road was underway. One important wizard that I met on my road was Dr. Jerome Rosner.
Jerry Rosner was a oner, a behavioral optometrist who was involved in a non-optometric research project that would become seven years of basic learning research at the University of Pittsburgh’s Learning Research and Development Center. He was attempting to study learning to determine which perceptual factors were the foundational ones needed for learning the basics of math, spelling and reading. He also wanted to demonstrate whether or not the perceptual dysfunctions that they might uncover could be remedied.
For three years, I was his student. I learned more than I would have in 10 or even 15 years of private practice.
He taught me testing techniques, therapy techniques, observational strategies. I learned to sort out the wheat from the chaff, to eliminate the unnecessary, and to pare down the testing and training to only that which gave the most information with the least investment of time – all this for the sake of the kids and my own sake as the therapist. Jerry was extremely patient with me, almost like a father with a son.
Yet I was frustrated.
…OF CYCLONES AND WIZARDS
My frustration wasn’t with Dr. Rosner or the kids. It wasn’t even with myself. I was frustrated with the SYSTEM. School principals, teachers, colleagues in optometry-all of these were part of the problem. Ophthalmologists were an obstacle too, but I expected that one-the financial competition in that area was outweighed only by their projected attitude that optometry was a second-class profession in some way that really didn’t bear up under medical cross-examination.
Here I was, armed with powerful tools to use in dealing with lazy eyes (amblyopia), crossed eyes (strabismus) and learning problems (“dyslexia”), and perhaps even the “Sandy C.’s” of life, but I found myself fighting these human obstacles and the skepticism that was generated by them. I was ready to change people’s vision, to change their lives by improving and enhancing their ability to use their vision, their minds…and I really was doing that.
But the storm of negativism was discouraging at times. It pulled me back toward Kansas, not onward to Oz. I seemed to always be fighting skirmishes, trying to defend what I was doing and trying to persuade parents that their children could benefit greatly from it.
I had many reaffirming glimpses of Oz, but the great inertia of the system kept anything more than a few individuals from the care that developmental optometrists like myself could offer. I stumbled along the Yellow Brick Road, three steps forward, two steps back, as new battle after new battle with rotten apples and flying monkeys reared its head before me. Was there a plot against me? A witch who orchestrated my frustrations? A storm coming to whirl me out of my comfortable world?
I had changed, and was willing to change even more, but Kansas kept trying to draw me back into its drab black-and-whiteness. I had no fondness for Kansas.
Mentally, I reviewed what I knew and had glimpsed of my new Oz: Vision is not just inborn, vision develops. Vision is motor output, not input. (If you couldn’t see right, you wouldn’t be right!) These were the concepts from which my professional Yellow Brick Road was being made. The ideas were not simple, but as I soon discovered, they made far more sense to parents and patients than they did to the doctors who had been taught and therefore treated the eye as if it were a camera.
I had a major life lesson to learn, though.
At my first-ever symposium presentation in Washington, DC, my paper created a stir. I talked about how visual stress was almost certainly the main factor in the development of nearsightedness. Five notable individuals approached me afterwards. Two asked me which university I was from, two attacked me for bringing the “wrong paper” to this forum dedicated to visual therapy and new ideas (how ironic!). “We don’t need to know all that physiological stuff!”, one of the nay-sayers protested.
And then, there was Elliott Forrest Another of my wizards.
I had read many of his papers. Dr. Forrest, a professor at the State University of New York’s School of Optometry, was a genius who was one of the deeper thinkers in behavioral/developmental optometry. He quietly approached me that evening.
We were in the hallway outside the room where the “cracker barrel” session was being held, and where many new ideas found their root as minds threw around ideas that that eventually found their way into books and research.
After introducing himself, he asked, “Did you hear my paper at the COVD meeting?” [COVD: College of Optometrists in Vision Development.]
“No,” I admitted that I hadn’t.
“The paper was very much like yours, and I wondered if you might have heard it,” he went on. “But my wife read the draft and convinced me to leave all the physiology out of it. She said that the doctors wouldn’t sit for it.”
I told him about the reactions I had received in the lecture room following my paper. “Well, I’ll have to tell her that she was right!”, he said. We both laughed at that.
His COVD paper had a very long title, but the essence of what I learned then and have found dogging my heels on the Yellow Brick Road ever since, was contained in the title’s first five words: “The Tyranny of the Premise”. The essence of this is that we are all tyrannized by what we are taught. What we are taught and told is so. The tenets of our belief are laid by our mentors, our Very Important People in our lives: parents, teachers, ministers, professors. Few students have the insight or the lion-like courage to break beyond what they are taught-even when the facts they are taught are belied by their observations in the patient before them-facts that could not possibly fit the model, the premises that they have been taught and digested.
My symposium paper was a unifying hypothesis that speculated upon a mechanism that created nearsightedness, farsightedness and astigmatism as a by-product of visual distress. The pivotal “switch” that made it one or the other (nearsightedness or farsightedness) or a mix (astigmatism), was the effects of stress on the personality of the individual. Dr. Forrest was writing a book on stress and its impact upon vision. My presentation confirmed his own theory. Later, we exchanged papers and he included a reference to my paper in his book “Vision and Stress”.
I bring up this point to illustrate the storm I found myself struggling with then and to this day (and will, probably, for the rest of my life): people legalistically cling to what they know. JR had almost gotten lost in the shuffle because of that attitude.
Even when you or I present evidence of the accuracy of our new ideas, critics tend to withdraw to the safety and comfort of their own ideas and data. “Your data isn’t as good as my data!”, they seem to say, dismissing any consideration of new concepts.
It’s just human nature, I guess.
The most dramatic discovery that I’ve uncovered in the learning model that I use is the importance of bilateral integration, but that really wasn’t new, even when I described it in a chapter that I wrote for a monograph on the integration of vision with the other senses. Like so many “new” concepts, we are always building on the foundations, the shoulders, of those who have preceded us. Few new ideas arise magically, mysteriously. The seeds of innovation are already planted, we who innovate merely prune and replant, and hybridize the old ideas, distilling the best of what was there long since.
In my case, I built on to Rosner’s foundation, who was building on Strauss and Kephart, who in turn, most likely, built on Orton’s work. Educational and psychology giants like Piaget, Montessori, Edward Seguin, and all the way back to the great Swiss educational reformer, Johann Pestalozzi in the late 1700’s, built upon the others’ foundations.
Rosner’s research revealed that the learning skills that were criterion-referenced into academics boiled down to two essential perceptual skills: Visual Analysis and Auditory Analysis. His discovery may have been almost too simplistic: frustration seemed to be looming in the background, when he said,
- “Are there other critical variables – perceptual skills – that relate, in a different way, to classroom achievement? Probably. Those already identified and described in this paper do not seem to be sufficiently extensive nor adequately complex to account for as much of the variance in classroom achievement as we would like. In retrospect, they may even seem trifling, compared to the time and effort devoted to the task by the staff of this Project and the many other LRDC Research Associates who have contributed valuable guidance. Thus far, however, no other important variables have been defined. Perhaps, as Simon [ed. note: a fellow researcher]…states: ‘A man, viewed as a behaving system, is quite simple. The apparent complexity of his behavior over time is largely a reflection of the environment in which he finds himself.’“
The Development and Validation of an Individualized Perceptual Skills Curriculum: Rosner, Jerome
LRDC, University of Pittsburgh, 1972/7
Rosner was closer to Oz than he many have fully realized. The quote he cited in the excerpt above may say more than enough: “A man, viewed as a behaving system, is quite simple.” My experiences as I learned from him and others bears out this observation: though the mental and physiological processes are almost mystically complex, their day-in, day-out development appears to be almost ridiculously simple.
For thirty years, all that has been clinically necessary in the greatest majority of the kids and adults was to address the visual and auditory analytical skills, the motor skills, and remove the visual functioning barriers. Remedying these four areas has proved enough to solve the difficulties in 80% or more of the population that I’ve seen.
Gross motor movement is the foundation for fine motor movement. Efficient fine motor movement refines oculo-motor performance, which further refines fine motor skills. these don’t happen one at a time, there is a synkinetic harmony-a simultaneous teamwork of each with the other, with Vision as the grand wizard in its own right, directing the further refinement of itself and the perceptual-motor skills that build cognition, even Mind itself….
Simply. Splendidly. Naturally. And rapidly. But it was resisted. Was it, is it, too simple an answer?
ROOTS OF LEARNING
Jane Healy, in her book “Endangered Minds: Why Our Children Don’t Think and What We Can Do About It“, brings out the point several times that neurobiologists have a message for educators: the brain does change and that change is driven by experience. The human brain has evolved in an environment where active experiences and manufacturing skills were the norm for development and survival. We now live in a video and cyber age where far too often, observation is the new norm. Mothers whose responsibility, primitively, was to teach language and social concepts are absent more often now, through no choice of their own. Fathers whose historical role has been to teach manufacturing skills and related concepts are more often absent from the family, either due to family breakdown or to the drive of work and materialism. Not always, of course, but often enough, especially in first-world countries where learning problems are more rampant than in second- and third-world countries. Does our modern civilization rob certain children of the experiences that would assure more proper neurodevelopment? I believe that the question is rhetorical.
I found myself besieged by storms of criticism and cynicism. Pediatricians, school psychologists (but oddly enough, not clinical psychologists), ophthalmologists, educators (but again, oddly enough, not classroom teachers, mostly just administrators and many school psychologists) – all echoed the tyranny of their taught premises: perceptual and visual therapy was worthless; all the V.T. optometrists were after was money; kids just need to be taught. They seemed unable to comprehend that many children lack learning skills.
Those learning skills can be learned.
It was so frustrating. I hated the foot-dragging. I wanted to say to them all, “Don’t believe what I am saying, believe what I am doing!”
I was dealing with kids called dyslexic, ADD, ADHD, learning disabled, depressed, oppositional/defiant, pervasively developmentally delayed, delinquent, globally delayed, anxiety disordered, and half-a-dozen other more minor diagnoses. We had success with them all, some dramatic, others merely satisfying. The only children we had little success with were the angry children: children who were passively simmering over slights, real and those merely perceived. Some were angry at their teachers, many more with their fathers, and one memorable one with his mother.
When we helped these children and young adults develop new vision, new perceptual styles, they found success, self-confidence and hope. Their lives changed. I was helping them to change their lives.
Just like Dr. Manas had said in our visual training classes:
“There is no professional who has more power to change a person’s life than his optometrist doing his job properly.”
If only they could see beyond Kansas, see the world of Oz down at the end of the Yellow Brick Road.
It takes a storm to move a person, sometimes….
LOOKING AT JR(The Tin Man, a Scarecrow and the Lion)
When I tested JR, using the standardized perceptual tests of The Learning Clinic protocol, we found a pre-teen boy with first-grader’s skills. How could this child ever fully profit from the classroom experience? The checklist of symptoms that his mother had handed me looked like a war zone of check marks. He had visual difficulties, movement difficulties, auditory perceptual difficulties, visual perceptual problems, and he could barely blend information from one sensory channel to that from another.Like the Tin Man in Oz, JR needed a Brain, it seemed. And when I looked at the video of JR’s first experience with the wraparound assessment center, it was apparent that the boy I was now seeing who had brought such willy-nilly and angry emotions in with him now had a heart bigger than any Oz-ian (is that a word?) Scarecrow. His mother was the Lion, for she had fought courageous battles for the boy to get him to this point.I had a ton of reports to catch up on before I could begin to understand this boy who I was now committed to try to help. As I pored over them, I saw a pattern of progress that by rights shouldn’t have been there-a behavioral pediatrician had tested him over a period of three years as part of the medical assessment needed to keep JR in his private school in California and her results showed something that Diane said no one had mentioned before-JR had improved one year for each year he had been schooled at the center. True, he was three years behind, but the data showed that he wasn’t falling any further behind, that he was growing one year mentally for each chronological year. I checked with several of my friendly experts and they confirmed that autistic children don’t generally change year for year. Hmmm.JR had a number of reasons to have neurological problems. His delivery was difficult and though he was fine at five minutes after birth, initially he was a “blue baby”, indicating some degree of oxygen deprivation had occurred and it had to be administered to him. As a toddler, he had fallen down a flight of steps and suffered a head injury; he was prone to high fevers. He also had chronic ear problems over the next months and years, requiring surgery to implant tubes.
Any of these can cause later developmental problems, but JR had shown sucking difficulty and a hyper-tactile response from shortly after birth, being overly sensitive to touch. He also had some seizure activity, they thought. The neural implications of these are not clear-cut, but they suggest a brain insult of some degree, according to various sources.
“Poor kid”, I thought, as I reviewed the many reports from the various specialist who had seen him over the years. The little guy has been through a real war, and happily to say, from the looks of things, he was winning.
The reports from California were encouraging. The autistic program at the private school he attended had indeed kept him from falling behind, but he wasn’t getting ahead. The agency who evaluated him here in Pittsburgh and was to provide him with 40 hours a week of one-to-one wraparound services did a remarkable job of assessing him over the four years he’d been with them to the point when I saw JR.
However, there was a tolerant air in the one report where a Pittsburgh developmental pediatrician discussed the subject of the Doman techniques that Diane, Walt and JR learned to do at the Institutes for the Achievement of Human Potential-and had embraced wholeheartedly. He cautioned about alternative methods (yeah, boy, had I ever heard those same kind of complaints about Visual Therapy!)-and requested that scientific reports be supplied to him. Hopefully, he’ll be able to read these pages and perhaps find out for what might be the first time that 10 weeks later, the psychologist at Pressley Ridge was nothing short of amazed in her report of how much change had occurred in JR in the 3 months since she had last seen him. She mentioned the treatment techniques JR had been doing from the Doman Center without comment, she didn’t connect them with any progress since the time of her last evaluation. She said:
“JR has markedly and dramatically decreased tantrums and aggressive behaviors as well as self-stimulating behaviors. On the other hand, academic knowledge has skyrocketed …” and, “Each time I have seen JR, following the first evaluation, I have noted remarkable progress and today was no exception. If anything, the pace of JR’s progress has accelerated.” And, lastly, “JR is making remarkable progress. Within the last year, there has been incredible growth on his part which could not have been predicted in September 1996. JR’s autistic-like symptoms are markedly diminished.” [Emphasis added.]
Don’t misunderstand. I’m not giving any blanket endorsement of the techniques of the IAHP. I’ve seen disheartening failures here in the Pittsburgh area. But the rate of change had accelerated in the same period that the cross-crawling, patterning, and masking techniques had been undertaken. Coincidence? We can’t know for sure, but something about the process appears to have worked, though precisely what we can’t know. Objective evaluation of their methods would be of real value right about here.
The current attitudes of medical disdain about the IAHP won’t lead us to any great enlightenment.
My testing revealed a disheartening aspect of JR’s development. Even though his social and academic skills had changed and he was now able to deal much better with pragmatic speech, there was virtually no difference in his mental age as tested by my perceptual battery (see Table I). How can that be?
Moreover, JR was off all his heavy-duty drugs and was now sleeping through the nights, and that, without diapers. This shouldn’t be happening, I think others would say. I just took it all in for consideration. True, there were no reports of studies correlating the tests of perception that I was doing with the Leiter and Expressive 1-Word tests, the two primary tests that were used, but I’m not attempting to say that. What I am saying simply is that Table I shows that at about age 8½, JR was tested in California as having the intellectual skills of a 5½ to 6½ year-old, and that four years later, we measured his perceptual skills as being that of a 5½ to 6½ year-old.
How can he be reading at a second-grade level with such poor perceptual skills?
You need to know a bit about people with brain damage. Those individuals very often test much poorer than their skills would suggest. That is to say, they are able to do much more than testing would suggest. We have to be careful to not over-rely on test results when the child’s behaviors suggest that the tests are minimal evaluations, not totally accurate ones.
Over the years, I had seen others change dramatically in spite of dire predictions-and yes, even when they were my own sour expectations-and I was not about to say no to JR, if he and his family were willing to consider a trial of therapy, with continuation of the therapy to be predicated on whatever or however much progress was possible.
We had our work cut out for us. In spite of encouraging comments in the prior reports of JR’s motor skills progress, JR at 12½ could not balance on both feet, could only hop on his right foot, and had other major motor inabilities such as only being able to do one sit-up. He had recently learned to skip and was able to do that only after much coaxing. This is important to understand, for kinesiologists over the years have shown that there are moderate to strong correlations of motor skills to academic performance although they are not cause and effect correlations.
His auditory perceptual skills were at the kindergarten and first-grade levels, as were his visual-perceptual skills. His ability to exchange experiences from one sensory channel to another was either non-existent or merely unable to be tested. Thus, he couldn’t relate sounds to pictures very well, if at all, and indeed, most of his reading was by sight recognition of the word forms.
We really had our work cut out for us.
WORKING WITH JR
(Repairing the Yellow Brick Road)
This was a mutual learning experience for Diane and me. She taught me how to manage JR with the skills she’d learned from the wraparound teachers, and she was an avid student of the techniques that I was teaching her about perceptual-motor skills training.
What delighted us both was how the work I had JR doing was such a natural extension of where they had left off in the IAHP training. We often laughed in the delight of discovery as JR succeeded with our ministrations, and as we modified the techniques. We worked on the five main areas that had evolved into the Learning Clinic protocol:
- Visual Skills – based in my functional vision training with Dr. Leo Manas.
- Motor Skills – based in Rosner’s Perceptual Skills Curriculum (PSC) and adapted physical education strategies.
- Visual-Motor Skills – derived from the PSC and traditional developmental activities.
- Auditory-Motor Skills – based in the PSC and Computer Orthoptic activities developed by Dr. Sidney Groffman.
- Integrative Skills – developed from the PSC and Groffman materials, supplemented with traditional methods.
The Learning Clinic protocol is based upon Rosner’s discoveries and techniques in his research at the Learning Research and Development Center at the University of Pittsburgh, but especially upon the concrete-to-abstract hierarchy of development that he postulated and worked into the PSC. Several other factors were drawn upon as well. A providential telephone conversation I had with adapted physical education specialist Dr. Jean Pyfer of the University of Texas Women’s School at Denton, Texas, reinforced the need for gross motor and “trunk” motor skills. She shared with me that fine motor skills don’t naturally come in until trunk skills are in place.
A later conversation with Dr. Bill Ludlam of the Pacific University College of Optometry got me doing as much convergence and divergence range visual therapy as I could with the appropriate kids. He had done a small experiment with several training patients, and found that he was able to either develop or increase alpha-wave blocking neurally with increases in convergence skills.
This is probably very significant since it is known that kids with attentional problems more often have trouble blocking alpha waves. Alpha waves are important for stress reduction and reducing blood pressure, but they are resting waves, produced mostly with the eyes closed. They should be blocked with the eyes open. A high percentage of ADD/ADHD kids can’t do that! Because of this, some researchers have proposed that Ritalin works by stimulating the kids so that they don’t have to stimulate themselves with hyperactivity. Time will tell us either their ideas are correct or just how correct they are.
|Leiter Int’lPerform. Scale||2+3||4+6||4+10-5+5||5+8||XXX||TLCInitialtesting|
|Expressive1-Word Picture Vocabulary||3+7||4+6||5+2||6+6||XXX|
|Rutgers ACopy Test||XXX||5+3||5+11||7+0||5+9||6+7|
|Motorfree Visual PerceptionTest||XXX||6+6||—||—||6+2||—|
|Auditory AnalysisTest||XXX||R.S.=10Mid-1st||R.S.=16End of 1st||R.S.=14||R.S.=26End of 4th||R.S.=22|
|LindamoodAuditoryConcept’nTest||XXX||—||—||—||—||R.S.=34End of K|
|Auditory Organiz.Test||XXX||R.S.=4End of K||R.S.=6End of 1st||R.S.=4||R.S.=4||R.S.=End of 2nd|
Key: “R.S.” = Raw Score
During the three years at Villa Esperanza, there was about one year’s change each year.
In the four years in between, with 2 years being spent using IAHP techniques, there appears to be no essential intellectual changes
(though the top two and the bottom five tests are NOT equivalent). Many social changes did occur during that period, however.
In the six months records at The Learning Clinic, there has been at least 16 months’ and as much as three years’ change.
(Some of the scores were notably higher in interim test sessions: i.e., the AAT and the Rutgers A.)
We worked on JR’s oculomotor problems: an eye movement and an eye teaming difficulty that made it impossible for him to center his eyes easily at desk-top tasks, because they wanted to diverge, go “wall-eyed”. This had moderate to severe impact on his attention span, due to all the mental energy it took him to keep a page or pencil from flying into two separate images.
If and when he could fuse his eyes and get that one image, his very clumsy eye-tracking skills made smooth scanning of a line of words become a sometimes thing. He would jump sentences and words because of these problems. Frustration became a constant classroom companion, in part because of these problems and others. And boy, were there others!
His visual-motor skills when copying simple geometric figures were very distorted, with sizes of the figures varying considerably, splayed all over his pages and some only vaguely resembling the target shape. Over the weeks and early months, we retested and found that his accuracy had improved amazingly.
We were able to measure his changes using the Rutgers Copy Test, a well-standardized visual-motor test that is rarely used by psychologists. Psychologists are taught to rely upon the Bender Gestalt copying test. Preliminary data that educator Dr. Janice Abrams and I have gathered has shown that the robust relationship of both the tests to reading and math achievement scores fall away dramatically on the Bender before age nine, while the Rutgers tests (A and B forms) extends those relationships to almost age thirteen.
JR’s Rutgers scores changed twenty-one months in almost exactly three months’ time after the initial testing was done. This peak score fell off somewhat, but still showed 16 months’ total change six months after we had started.
JR was gaining.
His auditory awareness was changing as well. Auditory sequencing improved, up more than two years in six months, and his phonological skills (his ability to manipulate and discriminate the sounds of language) went up from mid-first grade to past the end of third grade in the first four months.
JR was gaining mental skills at an incredible rate.
We worked on his gross-motor skills; he learned to hop intricate patterns on a small trampoline, to do sit-ups and balance on both feet. His integrative abilities (visual to auditory, tactual to visual, and conceptualization) are coming along more slowly, but that’s mostly because his individual skills were so immature.
Under the protocol we are using, JR has not given any hint at all, as yet, of when his mental skills gains will stop outpacing the clock.
JR’s Yellow Brick Road is damaged and in need of repair, and it looks like he is fixing it faster than anyone could have hoped for.
Enrichment and rehabilitation of the human brain is a touchy subject, guaranteed to raise eyebrows and blood pressures on both sides of the topic-pro and con. Yet there have been highly positive reports for seventy years, starting with Skeels and Dye (and a few others before them) on through Heber’s Milwaukee Project in the sixties and the long-term conclusions of the Department of Education’s Early Intervention projects of the ‘70’s, ‘80’s and ‘90’s.
There is controversy. Yet, there were undeniable successes in their research.
One of the great frustrations that bugs the heck (or WORSE) out of me, is why the experts don’t examine what is common to all the successes and forget about what didn’t work.
“Count the yes votes”, is one way of putting it.
Maybe, like with JR, we’ll leave behind what we “know” doesn’t work and get on with what does work. Get clinical success and then look for the Science.
Maybe then we will get to Oz.
Simply. Splendidly. Naturally.
The number of neurodevelopmental optometrists doing this work is limited. Too many doctors are taught that this is not their domain. How could it not be? Some of the optometrists who do parallel work to what has been described above in JR’s treatment call themselves behavioral optometrists or developmental optometrists or just visual therapists. I coined the term “neurodevelopmental optometrist” in an editorial that was published in The Journal of Behavioral Optometry (Vol. 9, No.1). I think that that term says more about what it is that visual function-oriented optometrists do and where it is that it’s being done.
But I have no great hope that these methods will be embraced overnight. In the meantime, thousands and thousands-perhaps a million or more children-could benefit from what we already know of the general principles of neural rehabilitation.
Perhaps it’s just spitting in the wind, but I am in the process of quantifying some aspects of the simple program that we used with JR into a cookbook for the general public’s consumption and application.
I have set up a website to keep the public notified of the progress and availability of the program, called “Simply Brainy” ™, until it reaches publication. The address is:
The program was developed for children with learning difficulties, whatever flavor or label has been slapped on the child. It has been used for over thirty years at this point with a high degree of success, with well over 80% of the children and adults (yes, adults, too!) having received relief from their problems. Now we see it works with damaged brains as well, just like JR’s.
It is fair to say that it is no longer a test of the program, it is a test of whether it will be used, and that’s a human problem.
When completed, the program will consist of a cookbook CD-ROM and a Toolbox of educational games and activities that embody the basic theories and principles of the Perceptual Skills Curriculum as modified by years of use in The Learning Clinic.
Watch for it. Use it. Benefit from it.
Merrill D. Bowan, O.D.
The Learning Clinic