FAQ

Who are we dedicated to helping?

Although we cannot know precisely how many children and adults are receiving inadequate help for their “learning disabilities,” we believe that the community is large.

There are three broad categories of people we are dedicated to helping. First, there are children, young adults, and others who have had some contact with the medical system, most often evaluations by neuropsychologists, and have been labeled as having some neurological disorder, e.g., nonverbal learning disability or ADHD, perhaps atypical. These people often have received more than one diagnosis. Although they may receive some therapeutic intervention or advice, they are as lost as they were before their encounter with the system. They generally have trouble holding down a job or hold undemanding, low-paying and unsatisfying jobs, well beneath their potential. These people remain trapped by the atypical way in which their brains process information and other stimuli.

Second are the children, young adults and others who compensate well enough for their neurological problems and learning disabilities that they may not show up as “disabled” on a standard (non-extensive) neurological evaluation but whose problems functioning are nonetheless disabling. These people generally believe and often have been told that they have a psychological or psychiatric disorder, e.g., depression, manic-depression, obsessive-compulsive disorder, anxiety disorder etc. Sometimes these people are in therapy or are prescribed medicine for the psychological or psychiatric condition. Their neurological condition remains undiagnosed and untreated. They see themselves as failures, their problems as “their fault,” akin to some moral failing. They too are lost and alone and however comforting the psychological counseling or drugs they may receive might be, the underlying problem remains and the self-blame over it increases, often with tragic results.

Third are the “successes.” These people, who have GPS or a related neurological condition, are so intellectually or artistically gifted that they not only get by, they may enjoy considerable professional success. Yet these gifted people find many seemingly simple tasks exceedingly difficult. They may, for example, be unable to perform simple math calculations or have very limited ability to mentally represent physical space, thus finding themselves getting lost all the time. They may get overwhelmed easily by noise, motion or details in written or symbolic form. They may struggle to take organized notes or have great difficulty creating written plans of action or otherwise fail at tasks that seem simple to others. But because others see them as so “smart” or “successful,” they have no way to explain to others or themselves why they are so “absent-minded” or easily frustrated with the “simple” tasks of life or why they so often seem to be operating on their “last nerve.” Adding to those burdens, they are often criticized by others for “playing simple-minded” or being indulgent and lazy when “we all know you’re just not that stupid and no one’s that careless or absent-minded or inconsiderate.” Most people in this category are unaware that there is a neurological basis for their deficits. They are thus likely to internalize the criticisms of others and think of themselves as lazy, very easily bored and selfish.

People in any of these categories who do seek medical attention are all too often put on treatment regimes that do no good and worse, that may exacerbate the problem, e.g., they may be told to keep four notebooks instead of one, to write every meaningless detail down and to check the lists every day. For those who cannot manage one notebook and get overwhelmed with details these “therapeutic interventions” may lead to only more frustration or to symptoms that mimic obsessive-compulsive disorders as they spend their days trying to manage their lists and notebooks, a Herculean task for some, that requires constant concentration and may leave little time for any creative or original thought. Others are given medications that are at best useless and often harmful. Most notorious, stimulants are all too often prescribed, but for many who are overwhelmed by details, the problem is rooted in over-stimulation by the environment and when given stimulants pursuant to an ADHD diagnosis, for example, they may find themselves much worse off than they were before their “treatment” began.

The “lost” people in our three categories are lost not just to themselves but to the rest of us as well. Some hide out, perhaps in a series of menial jobs, stumbling their way through life. The less fortunate ones are institutionalized or even end their own lives succumbing to the depression that typically accompanies the condition. And even the “successes” who seem “present” to us are in some real sense lost as well—alone, unable to explain why they aren’t “easier” to deal with, happier or more accessible to family or friends. The “successful” ones are suffering needlessly too and are being held back from even greater achievements because of the mental burdens they are carrying around without knowing it and without anyone else’s help. The existence of the “successes,” however, tells us something else important: It suggests the enormous potential that is locked away within those who are lost or struggling—those who have not been able on their own to find another way round.

What is GPS?

Many of the people to whom Sarah’s Place is dedicated suffer from what we have named GPS. GPS manifests itself most noticeably by the impairment of certain mental functions. Persons with this neurological condition have difficulty discerning and manipulating certain spatial relationships. They also show marked deficiencies in their capacity to recall or manipulate numbers, letters, names, and other individual pieces of information or of the environment that are not embedded with meaning. Finger agnosia (uncertainty and confusion with the mental representation of one’s own fingers) is also a marker of this condition.

The name GPS derives from “global positioning system.” This name fits because those with GPS struggle to find an alternative way of navigating space and life. The “G” also connects to the notion of giftedness. The “P” to progress. And the “S” to society, sanity or syndrome. GPS bears some relationship to what is sometimes called Developmental Gerstmann’s Syndrome. Developmental Gerstmann’s Syndrome is, however, so poorly described in the literature and has, as a consequence, been all but abandoned as a diagnostic category that we have decided to begin by renaming and better defining the condition.

Who are the people of Sarah’s Place?

We are a community of laypeople whose lives have been touched by GPS or another neurological condition that is similarly poorly understood. We are either some of the luckier ones, those with GPS who have found the “other way round” and achieved great success in our fields, or people with friends or family members who suffer from GPS, many of whom have not yet found their way.

Many foundations that support research and treatment of people with a particular condition caused by some malfunction or “different function” of part of the human anatomy were founded by people with that condition and their friends and relatives. But with the exception of Sarah’s Place, we know of no other such organization that was founded by such lay folks before the medical community had stamped with its approval the fact that these lay folks actually “suffered” from anything or that the “anything” of which they claimed to suffer was really “there.”

How is it that the people who founded Sarah’s Place were not afraid to step out ahead of the medical community, not afraid to lead instead of follow, not afraid to define themselves and reach out to others like them without worrying about whether the “doctors” would approve?

The answer lies in the nature of the condition itself. GPS abides in many extraordinarily gifted people in different areas of life (academia, business, law and art, for example). As successful and highly intelligent people, we did not need an “okay” by others to be able to recognize ourselves and move to take action to reach out to people like us who could not, for whatever reason, find “the other way round” on their own, could not break out of their own darkness. We refused to wait for an okay, while others like us were suffering and alone. However uncertain we may be about which of our fingers is which, we know the power of our hands and we took matters into them. With our innocent fingers, we are determined to help and we will succeed.

Is Sarah’s Place focused only on GPS?

No. Because we do not know yet the precise nature of GPS, it would not be possible to restrict our work to GPS. Moreover, we would not choose to limit our work in that way, even if we could. We seek to find and help all those lost and struggling with neurological conditions that neither the medical community nor society fully understand and to fund cutting edge research that aims to increase the scientific community’s understanding of how the brain functions, how it fails and what interventions offer real benefit.

What is our agenda?

Multi-disciplinary research will be the hallmark of our efforts.

1. Identification. Our understanding of the dimensions and symptoms of GPS and other neurological conditions, such as so-called nonverbal learning disability, ADHD, sensory integration disorder, high-functioning autism—to name just a few, is poor and existing neurological and neuropsychological tests are, as a consequence, clumsy indicators of these conditions. Research in this area aims to develop a better understanding of symptoms and better evaluative tools for identification of these neurological conditions. These evaluative tools include not only diagnostic tests but also MRIs and similar imaging techniques.
2. Genetic and Environmental Triggers. We need a better understanding of the genetic makeup of GPS and similar neurological conditions and how they are passed on through generations. We also need to know how prevalent these conditions have been in different cultures at different times. Has the nature or prevalence of these conditions changed over time because of environmental factors? If so, when did things change and what might be responsible for the change? Is the attraction of people with GPS (or similar conditions) to one another in part a function of the isolation from others caused by ignorance about the condition or is it somehow “built-in?”
3. IQ. Of those with GPS and similar conditions who have found “another way round” and managed to achieve great success in economics, law, music, politics, art or any number of other fields, one generally finds an IQ score that, however high, seems just too low to capture what IQ is supposed to capture. And we do not mean here some new-age vision of intelligence; we mean intelligence as society has traditionally understood that word. Is the debate about the IQ test all wrong? Are the spatial questions, for example, skewing test results to confine the “intelligent” to the “not-so-smart” bin? If so, how can the IQ test be fixed to better fulfill its original aims?
4. Eating Disorders. Some significant number of people with GPS suffer from eating disorders, such as anorexia, bulimia or obesity. Symptoms include an inability to know when you are hungry (appetite agnosia), a preconscious sense of motion sickness, acidic stomach and a craving for certain foods. Body schema is often or always somewhat distorted. How are present eating disorder treatments and “weight loss or gain” regimes affecting those with GPS? How can these treatments be adjusted to better serve those whose eating disorder is caused or connected to an underlying neurological condition?
5. Other Health Risks and Benefits. According to the NIMH website 2004, there were no outstanding NIMH grants to study the closest recognized disorder to GPS, Developmental Gerstmann’s Syndrome. Still, some promising work has occurred, although it has received very little attention and its significance has not yet been realized. That work suggests links between Gerstmann’s and: lupus, anaphylactic shock, alcoholism, lead poisoning, and carbon monoxide poisoning. In addition, people with GPS may be more susceptible than others to herpes simplex and (in the past and in those countries in which it has re-emerged) polio. On the other hand, it is possible that people with GPS enjoy certain health benefits. Many of the families prone to this disorder seem to exhibit longer than average life spans as well as a youthful exuberance for life among the elderly. Exploring these links to health risks and health benefits may well yield important information about disease, longevity, and zest for life in advanced years that may prove beneficial to people with and without the neurological condition.
6. Education. People with GPS and some other poorly understood neurological conditions are “incidental” or “intuitive” learners. Our education system is, on the other hand, designed for “intentional learners.” In short, people with some of these conditions who succeed in life, often do so in spite of school, not because of it. That must change. We must study the educational path of those who have succeeded to find the secrets to educating those with these neurological conditions. Learning from the top down, not the bottom up, is key; keeping “meaning” front and center, not the details, is critical. We must begin at once to make our schools a “safe” place for these gifted people among us and not the nightmare it currently is for so many. We must begin at once to make our babies’ rooms “safe” with toys and art and music that soothe and do not disturb and disorient the many precious infants with this condition in homes everywhere. We need to start now.
7. Funding Scientific Research. We are dedicated to funding cutting edge scientific research that advances knowledge of how the brain works, how it fails and what interventions work best to enhance brain function, including the use of advanced MRI techniques that reveal much about the brain that standard MRIs are not capable of seeing.

Why the name, “Sarah’s Place”?

We were advised of course to follow the conventional pattern and name the foundation after the neurological condition. We chose instead “Sarah’s Place” in part because of the way it sounds, soft and inviting, not cold or clinical. The sound of things matters to people with GPS.

Susan’s Hebrew name is Sarah, a name she always liked as opposed to the harsh sounding Susan. She believed that she was named after her maternal grandfather’s mother, her great-grandmother Zlatah Werechson, a remarkable woman, whom Susan believed shared her Hebrew name.

In Zlatah’s time Israel was under Turkish rule and Zlatah ran a coffee grinding shop with a small cafe in Jerusalem which was a great gathering place for all members of the Jerusalem scene. She knew and understood people and they warmed to her, Jew and non-Jew alike. The Russian Orthodox Christian clergy, for example, often visited Sarah at home, stopping by for a cup of tea and a chat. Sarah was bold and courageous, smuggling food to isolated Jewish settlements, starting a new business on her own after her husband died and using her connections with the authorities to help people in need.

Most important, Zlatah was guided in her actions by her intuition or as Susan calls it her “sense.” Like Susan, she would wake up from a night’s sleep with some new insight about what she must do next or what she’d been doing wrong.

Zlatah knew how to listen to her inner wordless self and, as important, to listen to others. She knew how to change and how to love, and she used her gifts to aid others, despite the risks to herself, which were at times substantial.

One of her many sons, Pinchas (Pini) Amitai, became a world renowned entomologist and arachnologist. Most important here, he was not one who learned in school; he was self-taught, learning by sitting quietly, feeling and observing the creatures around him. Despite having little formal education, and no college degree, he spent much of his life teaching at Hebrew University. Outside his home he set up “Pini’s Room” for children to come by and see insects and spiders, which Pini would teach them about.

Years after this foundation was created, Susan learned that Zlatah’s Hebrew name was not Sarah, but Bracha, which means Blessing in Hebrew. Nonetheless, the name stands as a tribute to this woman from long ago. Sarah’s Place, a blessing.