Future Reflections Spring/Summer 2003
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The Rebirth of Our Son
by Rhett Waldman
Editor's Note: As far as I'm concerned, the word “special” is more than a little overused in the disability field. I tend to avoid the word altogether. However, in the case of Benjamin Waldman, I make an exception; Ben is special. I have more to say—especially about misapplied labels—but I think you should hear from Ben's father first:
Benjamin Waldman at his Braille writer.
The school psychologist peered over her impressive desk, eyeing my wife, who sat nervously on the other side. There was no rush to speak; after all, she was the professional; her tailored clothes and severely pulled-back hair testified to her status. My wife, however, was just a parent; she could wait. The psychologist finally spoke. “Mrs. Waldman, I guess you should know the reason that I've asked you to come today. Did you know that your son Ben is mentally retarded and autistic?”
My wife felt as is if the breath had been knocked out of her. The rest of the meeting was a blur as the psychologist outlined our first-born son's revised program. Next fall, he would be placed on the “autistic track.” No details were given.
When my wife came home and tearfully told me the report, we mourned together. It had taken us many years to accept the fact that while nine eye surgeries had reattached our prematurely born son's retinas to the backs of his eyes, his vision had never come in. A steady dose of Kernel Books and other literature from the National Federation of the Blind had convinced us that blindness is indeed just a physical characteristic, and that blind people can live happy, productive lives. Now the game had changed; what little we knew about mental retardation and autism led us to believe that a bleak future lay ahead for our son.
Knowledge is power. As we began to research the diagnosis, we began to discover contradictions. Certainly, the methods of testing seemed suspect, even to our untrained eyes. In one instance, the researcher had taken a cup away from our son, with the intention that he say, “Give it back.” It was duly noted that Ben said “I need help please” nineteen times (we've trained all our children to be polite). But because Ben did not perform as the tester had expected, he was considered mentally deficient.
The psychologist's “proofs” of our son's autism were even weaker. We had discovered that autism actually encompassed a number of syndromes, such as Asperger's. Oddly, none of these categories seemed to fit our son. True, he did (and still does, to a lesser extent) show some echolalia (the basis for the label). But his outgoing, friendly personality did not jibe at all with the withdrawn “inner world” descriptions that we found. When we brought this up to the psychologist, we received a curt, “It's a spectrum disorder.”
The plot thickened after we applied for Ben to attend camp HASC, a summer program in New York's Catskill Mountains for children with special needs. Moshe Kahn, the camp's director, came to visit his married daughter in Baltimore. He also found time to interview our son and us. After a talk with Ben, Mr. Kahn turned to us and said, “I've read the school's report on your son. This is a different child than what's in that report.” Ben was accepted, and had a great summer. He became the camp mascot; he was known for his daily walks around camp, recognizing voices and greeting people by name.
The last straw came that fall. Ben's placement in the school was a shock. His classmates were mostly nonverbal children who wore football helmets to keep them from hurting themselves. The teacher and aides spent the bulk of their time corralling their students. Whenever we dropped by the classroom, Ben was huddled in a corner—sometimes with headphones on, sometimes not—but always ignored.
Whenever we brought up our observations to the school administration, they stonewalled. What's more, a chilling self-fulfilling prophecy seemed to be coming true; as Ben stayed in the classroom, he began to take on some of the characteristics of his new classmates. He was becoming less verbal and turning inward into his own world. He was deteriorating. Something had to be done.
A kind neighbor showed us an article about a professor Reuvan Feuerstein, a world-class authority on cognitive disorders in children. Feuerstein was best known for his treatment of a British teenage boy, who had had half of his brain removed to get rid of seizures. Feuerstein had brought the boy from a semi-vegetative state to near-normalcy. We called the magazine, got Feuerstein's number (in Israel), and called him. There is no such thing as a coincidence; Feuerstein was due to present a keynote address at a psychologists' convention in Washington, D.C.—forty miles from our doorstep.
I took Ben to the hotel. We arrived there just as Feuerstein, an elderly gentleman with a long white beard, was finishing his speech to at least 800 cheering psychologists. I had never seen anything like it. We managed to catch Feuerstein as he left the podium. He took us to a quieter spot, did a few tests with Ben, and declared, “This child is as autistic as I am!”
Feuerstein then invited us to spend several weeks at his foundation's headquarters, in Jerusalem, Israel. We made quick travel plans and left. Two weeks in the Middle East passed like whirlwind days. Feuerstein's philosophy—to search for and work with a child's strengths, rather than concentrate upon his weaknesses—has led to creative approaches to children with special needs. Under Feuerstein and his talented staff, Ben underwent testing. The results were nothing like the reports and evaluations from the school. Instead of labels, we had an evaluation that described my son in terms of his strengths (which are considerable) and his potential to learn. (Let's just say that the diagnosis of mental retardation was off base—way off base.) My notes from that trip are filled with expressions such as “He's gold!”
With an evaluation in hand that portrayed a child full of capacity and potential for learning and living a normal life, we returned stateside. Now the real work would begin. In our naiveté, we thought that the school would accept the new diagnosis and go along with our plans for a changed IEP. After all, the staff there had heard of Feuerstein; his world-class reputation had reached our locale, and teachers and staff had wished us well when we had left.
We were wrong. When the school discovered that Feuerstein disagreed with its evaluation of Ben, it dug in and refused to accept the report. Ben would stay where he was, no matter what. So, we called an IEP meeting and brought in two volunteer NFB advocates—Barbara Cheadle and Loretta White. This meant war.
My wife and Ben met with Barbara Cheadle and Loretta White before the IEP meeting. Mrs. Cheadle is the president of the National Organization of Parents of Blind Children, and has advocated for parents for over twenty years. Mrs. White is a special educator and the mother of a blind daughter who also has additional disabilities. They read over the evaluations, listened to my wife, and played with and observed Ben. We had always been told that Ben would never learn to read, but our new evaluation gave us hope. They agreed. They didn't know when it would happen, but they, too, believed that Ben had this potential. Loretta had also been told that her daughter was mentally retarded (she wasn't), and that she would never learn to read Braille (she did).
The first skirmish turned into a four-hour battle, as the school staff tried to prove to us that Ben was as severely handicapped as they claimed. Not only did they fail, but also we received a troubling view into the back scenes at the school. At one point, Ben's orientation and mobility specialist announced her intention to cut off therapy to him because he hadn't progressed in a year and a half. Barbara Cheadle asked her, “What did you try with him?” It turned out that the instructor had been giving Ben one—just one—cane technique, and it hadn't worked. She hadn't considered the possibility that there might be other approaches. Mrs. Cheadle promised to get her up-to-date information on alternative methods, especially those pioneered by Joe Cutter, a well-known pediatric orientation and mobility instructor from New Jersey.
The second IEP meeting seemed to go better. The school staff did listen to our ideas. At the end, though, bureaucratic rigidity almost won out again. “Extended school year (ESY) services? Denied.” No reason, just, “He doesn't meet the standards.” Loretta White spoke up. She noted that during the two IEP sessions, school staff themselves had admitted that Ben had emerging skills (which is a legitimate rational for ESY) in a number of areas. Silence from the school staff. Mrs. White reviewed the history and rationale for ESY, and explained the rights we had as parents to have a timely and thorough discussion about ESY at the IEP meeting, and our rights to appeal. In the end, they grudgingly acknowledged and approved ESY for Ben.
We had had enough of the school. With the recommendation and support of his local education agency (LEA), Ben was enrolled in our local public school's program for the visually impaired. Almost four years of intense work in a supportive environment with teachers who believe in our son have paid off; Ben has blossomed. He reads Braille. He socializes with his classmates. Friends have invited him over. He sings in a boys' choir and has played his beloved Casio in a live concert. There's plenty of work left (isn't that the case with every child?), but Ben is making progress.
Ben gets a reading lesson from his Braille teacher, Irina Chernyak.
One crisis two years ago proved a boon for Ben. Just after his summer IEP meeting, the city announced that the vision program was moving to a different school. We drove by. The neighborhood was foreboding; a sign saying “no drug dealing on this property” hung three doors down. The school itself was a dilapidated dump. We refused to send Ben there. The city decided to build a one-child vision program in Ben's current school, around him. Instead of two hours a day of classroom vision work, he began to receive two hours of one-on-one vision work with Mrs. Irina Chernyak, an extraordinary teacher of the blind and visually impaired. Within the year, under Mrs. Chernyak's instruction, Ben was reading.
In October 2001, Ben was recognized for his hard work. At the annual convention of the National Federation of the blind of Maryland, Ben was awarded the Jennifer Baker Braille Literacy Award, for “best exemplifying Jennifer's enthusiasm and love of learning.” Ben was also cited for “keeping alive the memory of one who achieved so much in her short lifetime, despite overwhelming odds.” Ben, like Jennifer Baker, had overcome many obstacles in order to achieve Braille literacy. Ben's Braille teacher, Mrs. Irina Chernyak, was also recognized that evening for her outstanding teaching efforts; the NFB of Maryland presented to her the Distinguished Educator of Blind Children Award.
At the banquet, we met a former employee of Ben's first school. She took us aside and told us that by the time Ben was three, the school staff there had already unofficially labeled him as un-teachable, and had begun to treat him as such. That shook us; we had never been informed of any such evaluation. The evening turned bittersweet, as we wondered how far Ben could have gone, if his school had not abandoned him.
We aren't experts in dealing with the system. Before anyone accuses us of stereotyping, many professionals we have met have been heroic and sincere. Our only advice to parents of special children is to educate themselves as much as possible, and never, never, give up on their children.
From the Editor, Barbara Cheadle: I first met the Waldman family when Ben was an infant, but didn't really get to know him until, as Mr. Waldman described above, the family called me seeking help with his IEP program. I confess that despite my belief in Ben's potential, I never predicted that he would begin reading as quickly as he did. His success has been possible first and foremost because of his indomitable character. However, due credit must also be given to his school district and to two very dedicated and skilled teachers of the visually impaired; Sarah Samuel and Irina Chernyak.
Although the labels we have for children who learn differently do not seem to fit Ben, he does require intensive special education services. The Baltimore city program for the visually impaired, under the leadership of Sharon Zervitz, is to be commended for “thinking outside the box.” They developed a program for Ben based on his observable needs—not upon misapplied or ill-fitting labels. Since October of 2002, Ben, who turned twelve this April, has been mainstreamed in a regular fourth grade classroom with about twenty other students and a full-time aide. He still spends two hours a day with Mrs. Chernyak, his Braille teacher. Ben has more challenges to come; middle school and high school are big transition steps educationally and socially. Let us hope that the school continues to do right by Ben, and offer him a program that is grounded in high expectations and one that is based on his needs—not labels.
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