A Miracle For Chezkiyahu
Chezkiyahu, 12, was one of the first students in Meshi’s fledgling kindergarten, and one of the most severely disabled of all. His progress over the years—an amazing, near-miracle of a breakthrough---is a testament to the extraordinary care, treatment, perseverance and love of the Meshi staff. Chezkiyahu personifies Meshi’s mandate to provide the maximum for every child, regardless of the extent of his or her disabilities, and regardless of the time, effort and expense involved.
His physical disabilities are profound: At birth, Chezkiyahu was paralyzed from cerebral palsy, with little or no ability to move his arms, hands, legs, head or mouth. Beyond the paralysis, Chezkiyahu could not speak or communicate, nor could he eat. When he first arrived at Meshi, it was impossible to judge his cognitive level, much less see into the heart and soul of the child trapped within this terribly disabled body. Finding a way to make the most of his physical constraints, to establish communication, and to enable Chezkiyahu to express himself was a long, hugely challenging, tedious, and emotional process. Yet today, Chezkiyahu, often coined a “young Stephen Hawking,” is quite an articulate (via his special talking computer), highly intelligent and spiritual young man. Seven years after he first arrived, he will now be leaving Meshi to study in a regular school.
Occupational therapist Talia Farber, who directs Meshi’s assistive technology program, was a key member of the interdisciplinary team who worked to break through to Chezkiyahu and enable him to communicate with the outside world. “When Chezkiyah was first in kindergarten,” she recalls, “he was given a picture board showing illustrations of the main objects, people, activities and requests that related to his world. Because of his near-total paralysis, he couldn’t utter sounds or even point to the pictures to express his thoughts. Instead the staff would point to each picture, and he would use one of his few gestures or actions—eye contact or a particular foot position—to acknowledge which picture he intended to ‘say.’
A MASSIVE BREAKTHROUGH
“By the time he was around eight years old,” Talia continued, “Chezkiyahu quickly learned to read—and he didn’t just read the words, he remembered them and made meaningful sentences of his own. Of course, his spelling out words to communicate involved the painstaking cooperation of the staff, who went through the alphabet for each word, till the child was able to motion that the correct letter had been reached.”
It was clear to Talia Farber that Chezkiyahu’s life could be transformed by properly harnessing computer technology to his advantage. “Once again, the boy’s acute physical disabilities posed major hurdles. It took time, perseverance and a great deal of money to finally purchase and adapt a power wheelchair for Chezkiyahu’s needs, complete with a special table and custom-made seat to support him upright. We tried using two switches alongside the wheelchair headrest for him operate both the wheelchair and computer by slight head movements. When even that proved too difficult, the solution came in the form of a large, touch-sensitive joystick, for use by his stronger hand.”
INDEPENDENCE AND INDOMITABLE WILLPOWER
According to Talia, the joystick enables Chezkiyahu to power the wheelchair, manipulate the seat to position himself, and operate a computer. Using the joystick, Chezkiyahu presses a letter, which registers through a virtual keyboard. Through the computer’s specialized audio control, Chezkiyahu types and the computer speaks. By mastering computer skills, this young man is able to prepare his lessons, communicate with his friends, write e-mails, create PowerPoint presentations, and more. Today Chezkiyahu is completely independent in his schoolwork and solves his own problems.
“Most important, Chezkiyahu is now able to share his inner world with us, his intense curiosity about nature and his love of Torah and high spiritual aspirations,” declares Talia. “Meshi gave him the gift of mobility and communications, and this smart, motivated student is now capable of learning with others within the framework of a regular school. We have no doubt that his courage and indomitable willpower will be an inspiration to all.”
