“So what’s her problem?” dominated every test and every appointment with therapists and experts in Shunamit’s early childhood. “What’s her problem?” I used to repeat the question and add: “She doesn’t have a problem. She has a load of problems!”- all sorts of difficulties, incompetence and lack of skills and, last but not least, “everything that she has and you can’t see,” I used to add defiantly.
“Her problem” was a code word for the one that would put Shunamit in an identified diagnostic category. A category that the experts at the Sheba Child Development Institute in Israel tried to place her at the age of two, following a series of tests with no indication of pathology but with an untitled category called “problem”.
Shunamit did not have a “problem” she had a pile of problems, the beginning of which was evident in the first year of her life.
The experts noted difficulties in Shunamit’s fine motor skills, “poor muscle strength in the hands,” lack of separation of movements in the palms – using all the fingers of the palm instead of using only the thumb and forefinger. Hence the difficulty in using objects like a spoon or a pencil, and difficulties in hand-eye coordination.
Diagnosis included her disabilities in gross motor skills as “shoulders slumped and head inclined forward,” “large size,” prone to hypotonia, a disruption of muscle tension in her ability to accurately perform voluntary action, upper dorsal kyphosis with a hump expected at the age of six.
And of course, they identified developmental delay and considerable difficulty in concentrating, combined with severe behavioral disorder: pronounced restlessness and frequent outbursts.
Yet Shunamit also had curiosity, a desire to learn, sensitivity to her human environment, and perceptive understanding of people. Abilities that were not measured in IQ. These were the tip of an iceberg, hidden from the eye of the conventional textbook diagnosis and from the eyes of traditional therapists and diagnosticians. For them what mattered was Shunamit’s low cognitive performance for her age, with a double-digit IQ. Anything else outside conventional standards was neither considered nor measured.
Then, when Shunamit was seven years old and we had already despaired of all the tests and diagnoses, we reached a professional, skilled, experienced, and sensitive clinical psychologist who was able, in a mere two sessions, to bring to light what was hidden from the conventional eye. The psychologist found “fluctuations in the quality of thinking expressed in ‘surprises’ when giving an answer at an abstract conceptual or functional level (without auxiliary questions),” as the final report put it. “Shunamit understands instructions but is unable to carry them out.” The psychologist noted that there was “better potential” along with “good learning ability.” And for the first time after years of mistreatment and failed treatments, came the diagnosis, of an ” internalized negative self-image” accompanied by “uncontrollable” anger and frustration: crying, shouting, “kicking the table and chairs, hurting herself and shouting: “stupid”, “retarded”. And the concluding recommendation was to repair the negative and “work to build a positive self-image based on what she can achieve.”
It was an eye-opening report. It saw Shunamit not as a “problem” but as a child in her fullness. The report noted “a chubby and likeable girl, looking younger than her age,” making contact easily, following instructions, cooperating, and showing “great sensitivity to the examiner’s reactions and facial expressions.” It was a diagnosis that saw both the limitations and the potentials, the visible difficulties, and the hidden abilities.
We also found out that the supposedly standard tests at the Child Development Institute were wrong. The EEG test that said “normal” turned out to be patently abnormal. This was exposed when we reached Prof. A, an internationally renowned pediatric neurologist. An examination conducted in her clinic revealed for the first-time disturbances in the electrical activity of the brain. It was done by a skilled technician who knew how to calm children suffering from noticeable restlessness. For the first time, an EEG test was performed while a person was awake, not asleep. And the results, preserved to this day on a thin, crumbling paper, revealed the problem, an “EEG chart exceeds normal”, “a bursts of movement and wave.” Prof. A’. concluded that some areas of the brain functioned without a voluntary decision, and with disconnections of less than a minute every 2-3 minutes. In layman’s language “it is as if you lose consciousness for a very short time and then you have to return to the activity and place where you have been before the disconnection.”
Prof. A was also unable to detect a specific syndrome but noted “brain dysfunction” manifested in “a functional developmental disorder accompanied by pronounced attention deficit hyperactivity disorder, considerable learning difficulties and severe behavioral problems.” It was a promising starting point. Everything Shunamit experienced at all hours of the day, restlessness, lack of concentration and uncontrollable outbursts, was related to the mysteries of the brain. Prof. A. clarified that although no proven link has been found between a disturbance in the electrical activity of the brain and a behavioral disorder, from her many years of clinical experience, the connection is compelling. She concluded that medication, the light at the end of the tunnel, was immediately needed. A treatment that took time to adjust, and after a period of trial and error, the right medication was found.
We were no longer asked, “So what’s her problem?” And with an appropriate drug treatment we could see a promising horizon, allowing Shunamit to move forward on a very long complex yet encouraging journey. And with proper professional and therapeutic support, Shunamit was able to gradually overcome some of the difficulties and most importantly, to realize her potential.
Alongside the many difficulties and throughout the years-long roller-coaster journey, her social abilities and her skills to navigate public transportation, connect to peers, patients, and staff at the hospital where she works, were finally professionally recognized. As she describes herself “I have capability.” She continues to increase competence in a variety of areas and she is now in her fifth decade.
On her 46th birthday (September 2023), Shunamit received a certificate of appreciation for her “efficient work”, “cordiality and empathy,” “thoughtful attitude to her workplace,” “personal and warm approach to all patients, always generous,” doing her job in the hospital “above and beyond.”
Matia Kam- Shunamit’s mother – lives in Israel and has undertaken the life-long mission of standing up for her daughter Shunamit to foster her confidence, and to support her capacities and assets. Matia volunteers as a representative of special needs school children at the local municipal committee, encouraging parents of special needs children to both accept and respond to their children’s disabilities and needs, and to look for and help them realize their potential and capabilities, standing up for their rights and place in society.
Translated from the Hebrew by Ayala Emmett