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Spring 1998 Table of Contents
Versión Español de este artículo (Spanish Version)

What You Should Know About John

by Kay Spinella, Kathleen Kean, and Marilyn Harder, Boerne, Texas

Editor's Note: Kathleen and Marilyn are the adoptive parents of John McDonald. With the help of their friend Kay Spinella, they wrote this letter to share with John's ARD team. When we talk about the importance of parents as a part of a child's educational team, I think we sometimes only pay lip-service to a practice that is mandated by law rather than actually acknowledging and tapping into parental expertise. This letter is a fine example of how parents have critical information to share with educators about their child. If we do not respect their knowledge and truly seek their input in planning for the child and in carrying out programming, we are wasting an incredibly valuable educational resource. If you have comments or questions for either Kathleen or Marilyn you may contact them at Children's Inn, 216 W. Highland, Boerne, TX 78006.

John was born prematurely on June 5, 1991. He weighed one pound, fourteen ounces; nearly every system in his body was affected by his premature birth. He suffered Respiratory Distress syndrome and Bronchopulmonary Dysplasia requiring oxygen therapy. As a result of the oxygen therapy, he developed severe retinopathy which progressed to retinal detachment requiring lensectomy and vitrectomy. John is totally blind and has been fitted with prosthetic eyes.

Due to respiratory and gastrointestinal problems, a gastrostomy was performed at sixteen weeks of age (a tube was inserted into John's stomach and he is fed through this tube). John continues to be fed through the gastrostomy although he takes some food by mouth. The introduction of oral feedings and decrease in tube feedings led to a serious weight loss. John's nutritionist is monitoring his weight closely and has advised six cans of Pediasure via the gastrostomy tube daily. We continue to try oral feedings in addition.

For years John did not experience oral feedings and cannot see that people enjoy eating nor enjoy the sights we experience looking at food. As difficult as it may be for us to imagine, John has never developed pleasure in eating. We have found that offering some positve reinforcement immediately after feeding meets with moderate success. For example, John is allowed to play with his Speak and Say for ten minutes after eating by mouth. John can eat small portions of stage two baby foods and soft table foods.

John also experienced serous language delays and was almost completely nonverbal until recently (about 18 months ago). Over the last several months, John has made significant progress in his verbal skills. He has a sizable vocabulary, understands the concept of a sentence, and struggles to put his thoughts into complete sentences. However, his is not the speech of a normal five year old. When spoken to, John needs a few seconds to gather his response and sometimes a prompt to let him know you are waiting for his response.

John takes Intal daily but continues to experience frequent respiratory infections that often require treatment with steroids and bronchodilators. These medications cause hyperactivity and decreased ability to concentrate. John also exhibits "blindisms" such as flailing his arms, walking in circles, rocking, and sitting with his head down which decrease dramatically when he is actively engaged in learning.

John's multiple medical problems have created many traumatic situations for him when he has to be forcibly held down in order that certain medical procedures be performed. His age, his blindness, and his delayed verbalization have contributed to the physical and emotional traumas he has experienced. Many procedures were carried out when John was too young to understand a verbal explanation of the procedure. Being blind, he was unable to see what was happening around him. His inability to verbalize prevented him from expressing his fears and anxieties relating to the procedure as well as from asking questions that may have been important to him. As a result, being held is very threatening to John and often invokes memories of painful and frightening experiences. Very probably, it sets off the "fight or flight" response that enables humans to respond to threatening situations which, for John, results in agitation and the need to act rather than calming him. Speaking to John in a quiet voice or redirecting his attention to another activity is much more likely to be effective in calming and quieting him and eliciting his cooperation.

John's blindness is only one small part of his special needs. Every process that supports human life was an exceptional act for John's tiny underdeveloped body at birth. Even the most simple life sustaining acts of breathing and eating had to be mechanically assisted. The months and years of being poked and probed have left their scars. John is not like other "normal" children, nor is he like other blind children. His needs are truly special. Over the years we have found several effective ways of dealing with John's special needs. We would like to share our experiences with you today in the hope of providing the most appropriate and effective educational environment for John. While we readily acknowledge that John has many special needs, we are equally ready to acknowledge his special skills that deserve as much attention as his needs.

We agreed that John should repeat kindergarten because he is developmentally delayed in his social interactive skills with his peers. Center time is crucial for John for the development of these skills. However, there needs to be an aid present during that time to facilitate the learning of these skills.

John is older than most of the children in his class and he has not napped for several years. It is difficult for him to be still during this time because he is so eager to learn. Also if he naps during the day, he is unable to get to sleep at night. Perhaps the schedule can be adjusted to meet John's needs. It would be more beneficial for John to use nap time as pull out time for occupational or speech therapy, mobility training, Braille or reading.

John is very bright. Since he has already mastered many of the academic concepts of kindergarten, he may need an enriched kindergarten curriculum to avoid boredom and maximize his learning potential. Last spring assessment suggested that "John should be considered for enriched math and reading instruction." We have found that following John's cues is often an effective teaching tool. He is always eager to learn new things. He is an auditory and tactile learner, and he has an exceptional memory for details. When reading picture books to John, we often ask him what he thinks might be in the picture. For instance, "John, there is a picture on this page. Listen carefully to what I read and tell me what you think might be in the picture. I'll tell you when I'm finished reading and then you tell me what you think is in the picture, okay?" Wait for John to respond. His teacher might also ask one of the other students to describe what is in the picture to John. This includes John in the learning activity, acknowledges his ability to respond intelligently to questions, teaches the other students a little about what it means to be blind, enhances the observation and verbalization skills of the other students (John, too) and fosters a truly cooperative learning environment.

Because John is blind, he learns what we, the sighted, experience through sight via sound and touch. The sighted are constantly bombarded with visual stimuli. John's stimuli come from sound and touch. While the hallways may need to be a quiet zone for the sighted children, John's "vision" of the corridors comes from the echoes of sounds (his footsteps on the floor) and the touch of what is around him. Other children may need to keep their hands to themselves, but John's hands are his eyes --- touching allows him to "see" what is around him. John's world is already limited by his lack of sight. Should we further limit his world by denying him sound and touch? We believe that the concept of inclusion does not simply refer to including the special needs child in the classroom, but also to teaching the other students that this child has special or different needs from theirs, teaching them to become sensitive to these needs, and fostering a cooperative learning environment which includes all students, teachers, and aids.

When John is concentrating or listening, he often puts his head down. While this may seem disrespectful on the part of a sighted student listening to a teacher, this is John's way of focusing on what is being said and shutting out distracting auditory stimuli. John's retention of the spoken word is excellent. Being included in discussions is very important for him. He may, however, need a wait time to process his answer before he responds to questions. Sometimes a prompt or hint is helpful, for example: "If yesterday was the last day of August, what is the new month?" John yells when he cannot verbalize his feelings. You might verbalize for him what you think he is feeling. For example, "John are you saying that you don't want to do ----?"

Since John cannot see his environment, perhaps his teacher or O&M can utilize some other time to introduce John to areas such as the computer room and the music room to allow John to "see" his environment through sound and touch. A narrated tour while allowing John to touch (e.g., musical instruments, computers, tests, etc.) would enable John to have a better understanding of the different rooms in a school and their purpose. Hence, he would be more cooperative and able to participate when he is with his classmates in an instructional setting. Exploring these areas might be used to reward John for good behavior. For example, "John, if you do this now (specify what you want him to do such as sit quietly, walk quietly, etc.) then later (give specific times such as after lunch or during nap) we can explore the computer room, or music room, etc."

It is very important to verbalize changes in schedule. John cannot see what is going on around him. A verbal explanation of how and why the schedule has to be changed prepares John for what to expect and why. He is much more likely to cooperate when he understands what is going on and is involved in the planning. If he does not understand what is happening, he feels threatened and confused and may resist.

It is our goal to help create the most effective and appropriate learning environment for John. We would like to be involved in his education, and we want to work cooperatively with you to create such an environment. We believe that frequent meetings are an important factor in John's education. We only want the very best for John as all parents want for their children. We know that you want the same. If you feel we are overstepping our bounds, please discuss this with us. We would like to work with you to ensure John's educational success. We do not offer suggestions because we think we know more than you but because we know John better than you and have learned what is most effective in relating to him. We ask only that you try what we suggest to see if it is effective.

Despite his multitude of problems John seems to be a very intelligent little boy. He has an incredible memory and is able to concentrate for long periods of time when actively involved in learning he finds purposeful. For instance, he uses his cane appropriately when he feels it is purposeful and when he is not being led by a "helping hand." John loves to learn new things and likes to be independent. When people try to help John by not letting him try things on his own or protect him by doing things for him that he can do or learn to do for himself, he becomes frustrated and his "blindisms" become more evident. John needs to be allowed to take the risks involved in learning new things. John is ready and willing to take the risks. We believe that John has great potential; he just requires gentle guidance and facilitated learning.

We are grateful for the opportunity to share this information with you, and we thank you for listening.

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