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Summer 2001 Table of Contents
Versión Español de este artículo (Spanish Version)
By Pauletta Feldman and Mary Ann Reynolds
Reprinted with permission from: Future Reflections, Volume 19, Number
published by the National Federation of the Blind, www.nfb.org
Note from Barbara Cheadle, Editor of Future Reflections: The following article, co-written by Pauletta and Mary Ann, was originally published in 1995 in the VIPS Parents' Newsletter, a publication of the Visually Impaired Preschool Services in Louisville, Kentucky. I was curious about what had happened in the five years since they wrote it, so I asked them if they would do an update. They graciously agreed, and their updates conclude the article. Here now, is Pauletta's and Mary Ann's A Tale of Two Children.
Pauletta: On the surface, Mary Ann and I may seem very different in that we have chosen what appears to be two diametrically opposed school placements for our blind children. But we are not very different at all in the hopes and dreams we have for our children - we have just chosen different paths to help our children achieve them. The existence of placement options expands the current and potential opportunities our children have available to them, and we have taken advantage of these options.
Mary Ann's daughter Ashley and my son Jamie have been at two opposite ends of a continuum of services that exists for the education of blind children. Ashley, who is eight and in third grade, has been in a fully inclusive, public school classroom since kindergarten. Jamie, who is ten and in fourth grade, has attended the Kentucky School for the Blind since kindergarten as a day student and this year is in a half-day placement at our neighborhood school.
Parents often ask Mary Ann and I about our children, their schools, and why we've made the decisions we have. That's the purpose of this article - to share with all of you who are, or will be, struggling with the same decisions we have faced. But as a prologue, we want to say that nothing is written in stone. What works one year for your child may not work the next. The important thing is that parents are aware of the options and know that we may choose from any of a variety of combinations to produce the best educational situations for our children. We need to know our children, their strengths and needs, and to know what's out there in order to make good decisions.
Mary Ann: Our dreams for Ashley are the same as for our other two children: to grow up to be somebody special and unique, whether that is to be a homemaker, a teacher, a doctor, or whatever. We both want her to be happy. Some people hope and dream for jobs, independence, etc. I guess I expect that to come. When Ashley was born, she had a severe heart defect. Two years and three surgeries later, the worries of various abnormalities, the fear of hearing problems, and the diagnosis of "blindness" all but shattered our normal dreams. As sadness and abnormality creeped in, we longed for happiness and normalcy. I guess I'm still developing those dreams as she grows. She wants to be a preschool teacher. If she dreams about being a teacher, that's what I dream for her. I want her to grow up, go to school, have friends, go to college, fall in love, marry, and have her 2.5 kids. That's my dream.
Pauletta: It's hard to describe all of the dreams I've had for Jamie. Some of them have remained the same and some of them have changed over time. (For instance, I don't think he'll turn out be a classical violinist - he wants to be a rock star!) As a matter of fact, Jamie has lots of careers in mind and wishes he could do them all at once - be a librarian (like his Dad), a writer, a cook in a restaurant, a teacher, an actor, a disc jockey, and a musician. When he was five he wanted to be a fireman (I could see the headlines, "Blind Fireman Rescues Woman from Burning Building!") and a policeman. Mainly, I want a happy and productive life for Jamie. I want him to be employed and on his own someday. I'd like for him to be able to go to college. But most of all, I want him to believe in himself so that he will have the gumption to pursue his own dreams, whatever they may be.
Mary Ann: Ashley began attending preschool when she was four. Options were limited five years ago, more so than they are today. I looked for a regular preschool that would allow her to be around other children. I looked for over a year, honest! I found TWO places available. People actually hung up on me when I mentioned "blind." People wouldn't return my calls. I was hurt. I loved my child and wanted others to love her, too. I wanted her to enjoy preschool and learn things that I could not provide in the home. VIPS had provided intervention in the early years and through Melinda, an intervention worker, we got hooked up with Tully Preschool. We were welcomed with open arms. When we visited, the other children walked Ashley around to show her the room. After that, I knew this was the place.
Pauletta: Jamie started out at Christ the King Montessori Preschool two days a week when he was two-and-one-half years old. When he was three we switched to Kenwood Montessori, which was closer to home and where my older children had attended. There were new teachers and directors at Kenwood who wanted to build the school. They learned about us through a consultant teacher at Christ the King, and they came to us to recruit Jamie! That was wonderfully refreshing, since I had felt that I had to "sell" him just to get anyone else to give him a try! I ended up working at his preschool as a teacher's aide, so I got to see firsthand the great things he was doing and learning. The school offered lots of hands-on multisensory learning experiences. It was an environment in which Jamie was cherished.
Mary Ann: Ashley's preschool years were great. Tully had an all-day program and offered kindergarten in the afternoon. Because of that, she automatically remained another year. As time went by Ashley learned the school building inside and out (she started cane training at age four). Before using the cane, Ashley would run through the halls, never worrying about bumping into other children. I soon learned that Ashley, being half the other kids' size, needed her own independence so she could get on with learning. Because Tully is all on one level (not to mention its educational benefits) and Ashley was tiny, had heart disease, and was too brave for her own good, we decided after much thought that it was in her best interest to remain there. Our neighborhood school where my older children attended had turned Ashley down for preschool. After that, I realized that it was up to me to find and give her the best possible option.
Pauletta: I talked to a lot of professionals. I talked to lots of blind people. I tried to find out everything I could about all the special adaptations a blind child would need to succeed in life. I tried to come to grips with what were Jamie's greatest areas of need and what were his particular strengths. I believed that learning the skills of blindness would be key to his future success. And then I visited schools to compare program strengths with Jamie's needs. Jamie could have stayed for kindergarten at Kenwood Montessori, where there was a very strong mutual attachment. But I wanted to know what else was out there. I visited public school programs, one where there was a resource teacher and resource room for visually impaired children. I visited the kindergarten at the Kentucky School for the Blind (KSB), and knew immediately, in my gut, that this was where Jamie needed to be. (To enroll at KSB vision must be a child's primary disability, and the child must possess communication and basic self-help skills.)
Mary Ann: Because our neighborhood school would not take Ashley during her early training years, it really was not in her best interest to move her two years later. At Tully, she knew her way around and could independently move to where she needed to go - art, music, PE, lunch, etc. Now she could concentrate on academics and not just learning a new building. I taught elementary school and knew how important those early learning years were. I felt it's going to be hard enough - let's not make it any more difficult than it has to be. I thank God it worked out. She is at Tully to this day and will remain until she graduates from the fifth grade.
Pauletta: There were many reasons we chose KSB. Jamie is almost totally blind with just a little light perception. I was very concerned that he develop good Braille skills. Jamie was also physically delayed and had poor upper body strength and fine motor skills. At KSB, he could participate in adapted PE daily, and the kindergarten program focused on fine motor development and pre-Braille skills. While Jamie was in preschool, his social skills had not progressed as I had hoped. He was a very passive child. I was afraid that he would not do well in a large class - not come out of himself and not stand up for himself - so the smaller class sizes at KSB were attractive to me. I also thought it was important to his developing self-image for him to have blind friends and role models. He has been at KSB for almost six years now. However, we have begun easing him into our neighborhood school. That has been a wonderful process that could be the subject of a whole different story!
Mary Ann: Ashley is a popular girl and has numerous friends. Because many of the Tully children live in the community, she is able to meet with them on the ball field, in the grocery store, etc. The variety of activities in our community help others to see Ashley leading a normal life, and the kids know she is part of their broader world, too, not just a part of the school. This creates friendships. Ashley has always had the help of an itinerant teacher of the visually impaired (TVI). In the early years, the TVI would Braille stories in Grade I Braille (alphabet letters with no contractions) because the American Printing House for the Blind (APH) only produced early reading materials in Grade II Braille (with contractions). Even her preschool teachers helped her with Braille, and she had Braille labels for just about everything, even the fish tank! Ashley has kept many of her friends from preschool, often recognizing their voices in the hall. When she was younger, she enjoyed stopping and talking to all the teachers. She learned so much about those around her. Because many of the children already knew Ashley, they did not over-help her, but knew when to help and when not to. They still do this. Ashley is learning how to request help and hopefully how to give it back. Her teachers have been wonderful. Her primary teachers' classes have been right next door to each other. She has had the same locker for three years. How's that for consistency! Finally, I can drop her off at the side door, and, like everyone else, she walks to her locker, puts her things up, and goes about her business. People at Tully are warm and caring. There is always a friendly welcome when she enters the door every morning. Ashley has had to miss some things occasionally to fit her special classes in. One year she fussed at me every morning because she had to miss PE to have her cane lesson. Her sister even informed me that PE was Ashley's favorite class. I told Ashley I remembered when I taught, and all the kids said their favorite classes were PE and lunch, and at least she didn't have to miss lunch! We soon learned that for every loss there was usually a gain. Her TVI has been wonderful. I am so thankful for her patient endurance and sense of humor. She has communicated regularly with us over the years and helped Ashley learn so much. She has provided extra tutoring, daily balancing of hours for Ashley between resource room and classroom, and even helped Ashley get a computer system from the Lions Club. She has been a real source of support for me. Her specialized training in vision and experience with integrating other blind children has given us confidence and hope.
Pauletta: Jamie started cane training in preschool and was able to continue with the same O&M instructor at KSB. Since kindergarten, he has received regular O&M instruction from three times each week for individual lessons to group classes with his other classmates to work on residential travel and quiet street crossings. There has been a lot of class changing at KSB, so there are lots of opportunities for Jamie to practice travel! He must travel to different buildings to participate in music, PE, and to go to lunch. Each year, his O&M instructor has worked with him on his schedule and routes. Through third grade, Jamie had adapted PE and instrumental music daily. Daily living skills have been built into the curriculum. Jamie worked on the Patterns series for learning to read and write Braille. Patterns, available from the American Printing House for the Blind (APH) is a systematic and sequential process of introducing the 178 Braille contractions. Jamie was introduced to the slate and stylus, abacus, and computer in first grade. However, it is only this year that he has finally become proficient with them. He is using the computer more and more for writing, learning the basics of word processing, and getting introduced to computer bulletin boards. He has gotten to be in three full-costume, musical productions - last year he was Gepetto in the primary grades' production of Pinocchio! Seeing the kids act on stage was such a gift. It was something I had never imagined blind children would be so good at doing! KSB has been a real support system for me. Jamie's teachers have always been accessible and welcomed my input. They have been almost another extended family! Jamie spent a second year in third grade last year to hone some skills and to do some maturing. It also seemed a good time to explore new possibilities. We were feeling that his skills were now strong enough to move into a more integrated educational placement. Last year, after Christmas, he started attending our neighborhood school, Semple Elementary, one day each week. Our primary objective for this little experiment was social. We wanted Jamie to begin to adapt to a different learning environment and to make more friends in our neighborhood. There was mutual visitation between schools and a truly wonderful collaboration between the Jefferson County Vision Program (JCPS), KSB, and Semple administrators and teachers to make sure Jamie had what he needed. I think this easing-in process really paid off for both ourselves and Semple, giving all of us the support and time we needed to work into a comfortable relationship. This year, Jamie is going half-day, each day, to both schools. I couldn't be more proud or appreciative of my little neighborhood school, which has taken my little interloper and made him one of their own! Plans are for him to do the same for fifth grade. He has a long day, getting on the bus at 6:30 a.m. to KSB, where school starts at 7:30 a.m. for language arts and math, then back on the bus at 11:30 a.m. to Semple, where he has lunch and spends the afternoon for science and social studies until 3:20 p.m. He has music, PE, and computer at both schools. His JCPS itinerant teacher of the visually impaired has been wonderful and works with him three to four afternoons each week. His O&M instructor from KSB has worked with him on learning his way around Semple and is now working on walking between school and home.
Mary Ann: I've talked about the advantages. The disadvantages are that Ashley has little opportunity to meet and get to know other blind children. We sent her to KSB summer school, and she enjoyed that experience and enjoys meeting VIPS children. I am sure she has many questions she will ask another blind child when given the opportunity. We all need someone who understands. Ashley is attracted to many of the children and people in our church who have special needs and enjoys getting to know them.
Pauletta: There are always trade-offs. The main disadvantage of Jamie's placement has been that he hasn't gotten to know many children in the neighborhood and hasn't had to deal with typical classroom situations where there are many students and distractions. But I think we are working on these with the dual-placement.
Mary Ann: Because some things may need extra attention or explanation, we all try very hard to provide as much information as possible to help Ashley understand and experience things in life. Instead of talking about the park, we go. We make cookies a lot and talk about measurements. When they are talking about specific subjects in school, we try to find opportunities to increase her understanding. We provide as many "real" experiences as possible. She has a "preschool" in the basement with real cubbies and activities and she, her sister, and their friends learn a lot in "their classroom." I try to buy tapes and allow more music than usual and know that it is important to her. It is scary living on a busy street and having a daughter who is too brave for her own good. But hopefully, she will grow up and learn to be wise in her independence.
Pauletta: Will we ever be able to fill in the gaps? There just don't seem to be enough hours in the day! I couldn't ask for more from the education that Jamie is receiving in school! He's getting all the academics plus working on many blindness-specific skills. Jamie has to master writing in three forms (Braillewriter, slate, and keyboard). He needs to work on handwriting so he can sign his name. But there are still so many gaps in his knowledge and skills. We spend three times the amount of time another sighted child would spend on science and social studies - talking while we read, creating impromptu models to build on his concepts. Homework can take a lot of time each day, especially now that he's in fourth grade. With KIRIS testing coming up, he will be staying for extended school days to practice open response tests and performance events. He also needs down time, time for friends, time to learn to do things for himself. We fit in everything we can, but we also keep in mind that he needs time to be just a kid. And we need time to be just a family!
Mary Ann: Maybe we all just appreciate the little things more and that makes us all smile a lot. Yes, we are very happy.
Pauletta: Jamie's a great kid, he has fantastic educational services, and we have wonderfully supportive teachers. How could we ask for more? The only ones who can really determine what will be best for your child is you and your child with the help of supportive professionals. There are creative solutions to problems. There are combinations of services that can be developed to meet your child's unique needs. The best advice we can offer about pursuing service options for your child and making them work is this: Don't be afraid to dream. Don't be afraid to look at many possible paths to the same end. Be creative. Be flexible. Be willing to compromise. Know which battles are worth fighting, and save your energy for those. Try to solve problems at the school level without alienating your support base - fragile relationships can become strong ones when they are given time to grow. Your child's teachers can be your strongest allies.
Mary Ann: Well, after 14 years in our local public school system, we have decided to make a huge change - Ashley will attend the Kentucky School for the Blind this fall. Over the past two years she has spent many days after school just hanging out with the other kids at KSB, while attending the local school in her area. Over the years I have been intrigued with the changes that children go through once they become teen-agers. Boy, do they change! Ashley's teen-age personality is blossoming, and she is beginning to have a mind of her own. Part of her growing out of her cocoon is dealing with her blindness and all of the issues involved with it - accepting blindness as part of yourself and being proud of who you are. At KSB Ashley will meet other students who share the same challenges. She has never had this opportunity in an integrated setting. Don't get me wrong. I am not comparing the two settings. I am not advocating for or against either setting. I am merely sharing the experiences of my child. She is changing, and her needs are changing. My dream for Ashley is that she will grow strong wings and fly like a butterfly into the world as a happy and productive individual. But, right now, being in school with other blind peers will enable her to share common experiences at the academic and recreational levels. She is enjoying the conversations with the other students on issues related to their blindness. This is a new experience. We are excited to see how it will progress. For now, we are just going to take it one day at a time and see what happens. Each year is a new adventure. Looking over the horizon, I see Ashley on the road to independence.
Pauletta: A lot has happened in the five-and-one-half years since originally writing about Jamie's school placement in the VIPS Parents Newsletter. Jamie is now a sophomore in high school! Just to update, Jamie continued in a dual placement through eighth grade with KSB and our public schools, first at Semple Elementary and then at Barret Traditional Middle School. Sixth grade was rough - Barret had never had a blind student and was not accustomed to making accommodations. Their motto was, "Students adapt to us, we do not adapt to students." We knew that going in and believed that only minor adaptations would be required. Probably the hardest adaptation, which was also the biggest help, was for classroom teachers to learn how to team-teach with Jamie's vision itinerant. Barret teachers were not used to working with itinerant teachers. However, by seventh grade, things were running very smoothly. And by eighth grade, when Jamie graduated, the principal and teachers told me that one of the hardest things about losing Jamie (they had come to LOVE him) was losing his vision itinerant! The experience turned out to be a wonderful opportunity for growth for Jamie and for students and staff at Barret. While Jamie had EXEMPLARY services from our public school system, we continued to be a KSB family, too. Over the years, Jamie had made so many wonderful friends there. A disappointing aspect of his public school experience was that friendships at school did not transfer to after school hours. Jamie tried and we tried, but with the exception of one young man, Barret friends stayed at school. So, for his freshman year, Jamie went back to KSB full-time. He stayed part-time in the dorm to have more of a social life after school. That worked very well. This year he is living at school through the school week. That's been really rough for us. We've had to let go big time - let go of overseeing schoolwork on a daily basis, let go of having our youngest child at home! But Jamie is making us let go as he moves toward greater independence. He now has the active after school life that all teen-agers want. He does jazz band after school; he's on the track team and has daily practice; he broadcasts and trains other students for the school radio station; and somewhere in there, he fits time to study and just hang out! The path we are taking in raising Jamie and ensuring that he receives a good education will continue to be one with many forks and detours. Our resolve is to continue to be open to, and flexible in, making whatever adaptations are required to meet his changing needs.
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