Future Reflections Convention 1992, Vol. 11 No. 5
AN APPROPRIATE EDUCATION FOR CODY
by Martin Greiser
[PICTURE] Cody (center, standing at table) enjoys one of the activity centers in his classroom while waiting for class to begin.
[PICTURE] Time for a Braille lesson. Kim Hoffman works with Cody on his tactile reading skills.
[PICTURE] Kim Hoffman instructs Cody in Mobility and cane usage in a variety of settings.
From the Editor: Martin (Marty) Greiser came to his first NFB National Convention in 1989--four years ago. He has served two of those years on the Parents Division board, and was elected to serve as POBC secretary at the recent 1992 POBC annual meeting. Those who have come to know him both like and respect him for his steadfast and reliable ways. Marty was on a panel of parents who spoke last year, 1991, at the annual Parents Seminar in New Orleans. He talked then of the difficulties he and his wife were facing in getting an appropriate education for their blind preschool son, Cody, in their rural Montana community. Despite the odds against it, he and his now former wife Nancy persevered and put together an unusual—but workable--solution. However, there is a bitter side to this story. When Marty wrote the following article, he added these comments, "As one parent to others who may read this, Cody's success came at a price. That price was stress and marital neglect. In some instances that price was anticipated and willingly incurred, and in other instances unexpected and/or grossly underestimated....Our twins' premature birth; Cody's extensive medical needs and subsequent blindness; and the efforts necessary to create an appropriate education had taken their toll at the expense of our marriage."
Marriages may dissolve for many reasons, but how tragic, how unnecessary when even part of the reason can be traced to the burdens society imposes upon parents of blind children. The promise of P.L. 94-142 and the Individuals with Disabilities Education Act is for many blind children and their parents nothing more than words on paper. And the cost of even attempting to transform those words into reality can leave permanent emotional scars on every member of the family. As Marty also said about his story, "The good news out of all this is that P.L. 99-457, or 94-142, can work. The bad news is that it doesn't necessarily work easily or well."
But there is hope. As we have so often said in the Federation, the real problem of blindness is not the physical fact of blindness itself, but in society's response to it. We cannot change the physical fact of blindness--at least, not for our children—but we can, through determined, concerted action change the laws, regulations, and yes--attitudes--which guide society's reaction to blindness. We can respond to the bitter side of Marty Greiser's story--and hundreds of others like it--with resignation and sympathy; or with determination and love. The National Federation of the Blind long ago chose the path of determination and love.
Here, now, is the sweeter side of Marty Greiser's bittersweet story of his family's struggles to get an appropriate education for Cody.
After Cody's first year of preschool my former wife, Nancy, and I saw very clearly the difficult task which lay before us. Cody would have yet another year of preschool before he entered kindergarten. We felt Cody could not afford, nor would we tolerate, another year of preschool like the one just finished.
With all due respect to the efforts and good intentions of this private preschool, we felt that our son's needs were not being met in almost every respect. None of the teachers had any experience in the education of the blind or knowledge of the skills used by blind people. The teachers were to receive some training during the year, but this never materialized, and hindsight reveals it probably would have been too little too late to benefit Cody. We have come to realize that educational programs, curriculums, and knowledgeable teachers must be in place when the child walks through the doors on the first day of school.
Having attended three National Federation of the Blind Conventions where we talked with blind adults, teachers of the blind, and other parents, we felt reasonably informed as to what constitutes an appropriate education for a blind child and we felt we knew Cody better than anyone. We also believed we understood our legal rights in the special education process and the procedure to see that those rights are secured.
However, the fact that one recognizes the educational needs of his or her child and where the legal responsibilities lie doesn't necessarily mean those needs will be met. In our case, Cody is the first blind child ever to enter our local public school. The administrators and staff had no experience with the education of the blind and were at a loss, both in defining Cody's needs and in planning to meet those needs. And quite frankly we didn't know how Cody's needs would be met either.
So this is a brief background description of how we entered into our I.E.P meeting to define what was appropriate for Cody's second year of preschool.
At that I.E.P. meeting we successfully defined Cody's need for Braille, cane travel instruction, and inclusion in a mainstream kindergarten class. Of equal importance, we were able to define as an appropriate need that an instructor of Braille and cane travel be proficient in those skills.
In an attempt to find an instructor for Cody, our school district advertised for about six weeks in area papers for a classroom aide capable of working with the visually impaired. While there were many applicants, not one knew Braille or had any experience with the blind.
It soon became obvious that without a teacher proficient in and knowledgeable of blind skills, Cody's needs, as defined in the I.E.P., would not be met. We perceived this as leaving us with three options. One option was to initiate due process proceedings; another to relocate; and still another was to find the teacher that the school was unable to find. With regard to due process, we had documented our meetings with the school administrators over the past two and one half years. We had an appropriate I.E.P., and we had contacted our state office of public instruction for instructions on the initial steps in requesting a due process hearing. Now, in the event that our efforts at due process were unsuccessful, or if the stress or timeliness of due process became intolerably excessive, we had to prepare to relocate.
I was very fortunate to have an employer who was willing and able to relocate us to several areas around the country. We eventually found a place in Oswego, New York, where I could be placed. After talking with school officials and the parent of a blind mainstreamed kindergartner, we decided this was the place to go if we needed to exercise this option. We contacted area realtors, reserved a U-Haul truck, and listed our house for sale. We were prepared to relocate.
However, neither due process nor relocating had much appeal, so we next focused our efforts on helping our local school create an appropriate program. At this point I called the N.F.B., explained to Mrs. Cheadle our problem, and asked for any help or advice she might have. She, I understand, called Miss Rovig, Director of the Job Opportunities for the Blind (JOB) program; a joint effort of the NFB and the United States Department of Labor.
In about ten days, we received the proverbial phone call from heaven. It was from Kim Hoffman, a woman from South Dakota who would be graduating from college in the spring with a degree in elementary education. She said that she was blind and that she had heard there was a position open here that she might be able to fill. She wondered if we would be interested in having her as Cody's Braille teacher. Our first question was if she considered herself to be proficient in reading and writing Braille? To which she laughed and replied matter-of-factly "Why yes, I have been doing it most of my life." Nancy and I knew immediately that this was the person we wanted to teach our son. The subsequent phone conversations over the next months further strengthened our belief that she was the right person for the job.
Kim then had an encouraging phone conversation with the school administrators and was told she would be sent a job application. About two months later, despite three reminders to school officials from us, Kim had yet to receive that application. We then wrote a letter to the local school board requesting their assistance in the matter and for time at the next public meeting to present our concerns. This letter was hand-delivered to the chairman three days prior to the meeting, with corresponding copies to the school administrators. The day after the school board meeting, Kim had the application in her hand. The school then put together an intimidating six-member interviewing team of administrators, teachers, and related professionals.
To get Kim here for the interview, Nancy drove to South Dakota, picked her up and brought her back to Montana, where she spent a week with us. This gave us an opportunity to get to know one another better before we took her back home. Kim was the last applicant to be interviewed, and she was offered the position on the spot and allowed several days to decide.
After accepting the aide position, there was another problem which needed to be solved. That is how and where was she going to find a place to live. Since the aide position was only a twenty-hour-per-week job, how could she afford to come to Montana? This was not a new or unanticipated problem; we had been discussing it for several months. After pursuing several options without success, the best we could do was to offer her our home as a place to live at no cost to her. After considerable communication, this was agreed upon, although, she later (understandably so) insisted on contributing approximately one-third of her wages toward her support. At this point, I must make it clear that our offer to Kim was based entirely on meeting the needs of our son and in no way reflects on her ability to live independently. She had more lucrative job opportunities closer to home. So why would she accept this occupational arrangement? She says that she is acutely aware of and sensitive to the educational problems encountered by blind children and that she wanted to be part of the solution to those problems even if it meant dealing with them one child at a time. So, this was the setting for the pad from which our son's public school educational experience would be launched.
Kim arrived in the fall of 1991, and we began what would conclude a year later as a very successful experience for our son, and a year filled with learning for all the adults involved in his education.
To try and describe and account for all that transpired during the year would fill a book. So, I'll just touch on some of the significant events and accomplishments in role modeling, socialization skills, academic achievement, and family matters.
Just as an appropriate education is measured by more than academic achievement, we knew Kim had more to offer than just her impeccable academic skills. Her perspective as a blind person and her knowledge of, and access to, resources are unmatched by a sighted person. With Kim living in our house we had a very concentrated, up-close and personal view of the powerful effects of role modeling.
About a week after school started Cody asked me if Kim was blind. I answered "Yes," to which he replied, "No, she isn't," and I said again, "Oh, yes she is." And that was the end of the conversation. But for several minutes I could see the little wheels turning as he was obviously deep in thought.
Because of the limited space in our house, Kim would keep her Brailler under her bed. When Cody found this out, he started keeping his Brailler under his bed. Then there was the time when I went past his room and he was sitting on the floor in front of his Brailler, in which he had loaded paper, just pounding randomly on the keys as fast as he could. I inquired of him (in somewhat of an admonishing tone) as to what he thought he was doing? He answered that he was writing as fast as Kim. And we all know where he got the idea to ask Santa Claus for a talking alarm clock.
These are some of the immediately obvious effects of role modeling. It is much more difficult to recognize and identify the long-term emotional and psychological effects which I believe to be no less present. Kim's positive attitudes, her confidence in her abilities, her gregariousness, and her position as an adult in the classroom can't help having a dramatic positive influence on Cody's own self-esteem and feelings about his own blindness.
I believe socialization skills develop primarily by inclusion and association with mainstream activities. But this doesn't mean that they can't be directed, molded, or enhanced by deliberate efforts. Much of the success in this area has to be attributed to Kelly Samson, the classroom teacher. Without her sensitivity, receptiveness, flexibility, and efforts such a successful year would not have been possible.
At the beginning of the day Cody hangs up his coat and backpack in the same fashion as the other children and joins in play at the various activity centers around the room before class starts. During class Cody participates in all activities with assistance from Kim and/or Kelly when necessary. Lessons and materials are prepared and adapted in advance in appropriate and meaningful formats--whether tactual, auditory, or Braille—to enable Cody to learn alongside the mainstream kids.
Another success during the year was a marked reduction in Cody's mannerism of eye pressing (or poking). Kim and Kelly started a reward program of giving Cody a sticker for every day that he didn't press his eye or in which he corrected himself without being reminded. Three stickers and he was allowed to go up to the teachers lounge and get a can of pop (soda) or a candy bar. He certainly enjoyed his reward and frequently voiced his pride in his accomplishment.
After a two-and-one-half-hour kindergarten class, Cody spends one hour a day working one-on-one with Kim on Braille and/or cane travel. Her main instructional materials are the Patterns Program which she supplements with The Mangold Developmental Program of Tactile Perception and Braille Letter Recognition, and Braille Instructional Materials a Phonetic Approach, and Listen and Think tapes. Both Kelly and Kim rely heavily on their print and Braille copies of the Handbook for Itinerant and Resource Teachers of Blind and Visually Impaired Students (published by the National Federation of the Blind) for information, guidance, and creative suggestions. Each month Kim prepares and distributes to Kelly, us, and Cody's I.E.P. case manager a progress report in which she describes the subject areas worked on, Cody's strengths and weaknesses, pages covered in each program during the period, suggestions for home activities, and other appropriate comments. The last progress report of the year indicated that Cody has a 40-word reading vocabulary, can read and write all the letters of the alphabet, can read numbers 1 through 20, and can independently write numbers 1 through 10. He knows common cane skills for walking, stairs, doorways, etc. and uses them correctly when reminded.
It is at this developmental level that Cody will officially start kindergarten in the Fall of 1992. We all believe he is very well prepared, and that repeating kindergarten brings with it a unique set of challenges and opportunities. Kim will be back in the Fall again as Cody's aide and have her own apartment. Kelly will again be the classroom teacher, and the I.E.P. calls for more of the same, with only the goals adjusted.
As parents, we feel Cody is receiving more than just an appropriate education. He is benefiting immeasurably from normal involvement in family and community life while at the same time realizing academic achievement and independent travel. There is also a well-educated, talented, independent adult in his life who happens to be blind.
Our experience has taught us that the problems of educating blind children in the mainstream lie not in the cognitive capabilities of the children, but rather with the skills, knowledge, and attitudes of the adults who surround the child's educational life.