“Cognitively she will probably be fine, but at the age of six she will have a hunchback”—I heard this crushing unforgettable phrase from the director of the Child Development Institute Sheba Medical Center in Israel. Shunamit was at the time two and a half years old, after hospitalization due to high fever and seizures, and with a referral for diagnosis and treatment at the Child Development Institute. The director of the institute sat on one side of the office desk, and I, with Shunamit on my lap, on the other side of the desk. And in between there were tests and more testing, and a growing gap between therapist and patient.

This was one of our first visits to the Institute. The director of the institute checked the unstable posture of Shunamit, the bent gait, the unstable swaying with constant support of walls or furniture; her contracted shoulders, the tilt of her body forward while walking, as if on the verge of falling, so far from the norm. Shunamit did not fall much. She just tried not to walk much. She preferred to crawl, which felt safe, and she did it with agility and relatively quickly.

Then she was given a preliminary cognitive test, the doll and the string one. The director of the institute took out a small doll tied to a long thread. He placed the doll on the table next to him, and placed the twisted string in the middle of the table, closer to us. Shunamit at that time did not have the ability to use her fingers; she used her palm with outstretched fingers to turn the light switch on and off; she had difficulty taking hold of objects. A spoon or fork was a tough challenge. Shunamit looked at the doll, examined the thread, and after a minute (or less) stretched out her hand to the string – not to the doll. She immediately realized that the doll was far away from her, but if she pulled the string, the doll would follow. So she used the palm of the hand placing it on the nearest end of the string and began to drag it on the table. After several attempts, she succeeded. The doll was close to her and then in her hand. Shunamit looked at the doll and looked at me. I smiled. She did it! Then the director of the institute also looked at me and said the memorable sentence: “Cognitively she will probably be fine, but at the age of six she will be with a hunchback.” Reality refuted both of the psychologist’s assertions.

More than forty years have passed since that day. There have been many more meetings at the Institute, but their memory has faded and erased. Yet that meeting I remember with complete clarity but with no colors, like the old negative films in black and white (and gray).

For about two years, Shunamit was monitored and treated by the Institute. It was an extremely frustrating and exhausting experience but probably unavoidable in my own learning curve.

So what did the Institute offer? The routinized menu of those days was physiotherapy and occupational therapy by the book. The same book in which there was not a single chapter for Shunamit. And there were also numerous neurological tests that I completely deleted from memory–except for one: the EEG test in sleep (i.e., in sedation, light anesthesia) and the test results, the wonder of wonders and how not – were completely normal. They failed to detect the main thing, the frequent and sharp disorders in the electric activity of the brain. Disorders that apparently were the only possible clue to those frightening seizures, as well as the neurological background to her restlessness and behavioral disorder.

Two years after I closed behind the door of the Child Development Institute, the brain disorder was clearly seen and diagnosed in the clinic of Prof. A., the renowned Jerusalem neurologist, in a repeated EEG test. This time, the test was done in wakefulness, not in induced sleep. The test chart is more than 40 years old, a bit faded yet clear enough, it retains the same silent but screaming testimony of repeated sharp peaks. And yes, Prof. A. also failed to label Shunamit’s problems under a known category or syndrome (not a fragile X, not a Soto syndrome). But she understood and succeeded, after a process of trial and error, to offer a drug treatment, a miraculous chemical balm that Immeasurably improved Shunamit’s (and our) quality of life.

And there was one more important thing that the Director of the Child Development Institute may have noticed but ignored, or may not have understood, Shunamit was smart, curious and capable of learning, regardless of the myriad of difficulties, the delay in development and the behavioral disorder. He and the staff politely dismissed my repeated claim about the discrepancy between Shunamit’s level of understanding and her level of performance (obviously, after all, I am her mother). Shunamit’s abilities and potential were ignored, only her inabilities mattered.

So yes, the Director of the Institute noticed Shunamit’s understanding of the puppet and the string test as he uttered the “cognitively she will probably be fine.” However he stuck to the conventional professional wisdom in the 1980s that it was essential to focus not on the abilities the child had, but on her disabilities and inabilities; the child’s inherent potentials and hidden abilities were ignored instead of encouraged. There was no attention or reference to her desires or things she was interested in. It was not written in any book at that time. Shunamit was therefore offered a series of therapy sessions – an endless source of growing frustration for her, with outbursts of uncontrolled anger that were both her reaction and protest to the constant demand to do what she was unable to. She experienced an ongoing process of treatments without a shred of a positive experience, without the slightest opportunity for success. More than once I asked the therapist, who had been usually kind but helpless, “How would you feel if you were told time and again, to do what you can’t do. And never, not once, get a chance to do what you can and want to do?”

And so, after long and unnecessary months of futile useless treatments, I decided to cut off from the Child Development Institute. I was totally convinced that it was neither the right treatment nor the right place, and wrote to the director, “It is impossible to help Shunamit without considering and respecting her personality, without finding out her desires and interests, without considering her abilities, instead of focusing only on her disabilities”. Today I would have written it differently as well.

And – no, Shunamit has not become a hunchback. Not at the age of six and not at the age of sixteen.

*Matia Kam is Shunamit’s mother. She is a writer living in Israel and has undertaken a life-long mission of standing up for her daughter Shunamit, and others like her, and to nurture Shunamit’s confidence in herself, in her capacities and giving her tools to protect herself in an unfriendly and sometimes hostile environment that includes incompetent professionals. Matia has volunteered to be a representative of special needs school children at the local municipal committee, encouraging parents of special needs children to accept their children’s disabilities, to respond to their need, to promote their potential and capabilities, and above all to stand up for their rights and place in society.