An Appropriate Education

Kimberly is 9 years old. She lives in Louisville, Kentucky, USA with her parents, an 11-year-old brother and a 6-year-old sister. Kimberly attends school in the Jefferson County Public School system. It is the 26th largest school district in the country with more than 95,000 students in the it’s 87 elementary schools, 23 middle schools, 20 high schools and 22 other learning centers.

When Kimberly was 4 years old, her geneticist indicated that she exhibited characteristics of Kabuki Syndrome. He confirmed this diagnosis when she was 7.

Kimberly is non-verbal. Although her hearing is within the normal range, she uses sign language as her primary mode of communication utilizing over 1,000 signs. Her geneticist has indicated that her inability to produce speech is probably related to a neurological problem.

At the age of 3, our daughter began preschool. For 2 years she attended a regular preschool program through our public school district. Her preschool class included about 21 children, 3 of which were children with special needs and the rest were typical. The teacher was exceptional in her ability to interact with all of the children individually and as a group. A classroom aide assisted her along with an aide assigned to the children with special needs.

The first year that Kimberly was in this class, the teacher recognized that sign language was the communication mode that Kimberly utilized most naturally. She saw the need in the classroom of having an interpreter or signing aide who could work with Kimberly to expand her vocabulary and teach her to use her signs effectively and conversationally. She encouraged us to request a signing aide for Kimberly, and, even when we did not know what needed to be done, she ensured that Kimberly’s IEP stated that Kimberly required a full time signing aide. Before the first year was finished the teacher interviewed and hired a signing aide for the following year.

During the second year of preschool Kimberly bonded with her aide and many of the children. She attended a full day (9:30-3:30) which enabled her to participate in extra social activities, like lunch, additional recess, center time and free play time.

Our school district is set up so that each child is assigned a “home” school and every school is part of a “cluster” of schools. Parents have the choice of enrolling their child in their “home” school or any of the other schools in the “cluster.” Buses are provided to every school in the cluster. Parents can apply to schools outside their cluster, but they are admitted last and required to provide their own transportation. Students with special needs are usually allowed more freedom in their choices.

When it came time for Kindergarten, we looked at a regular class at our home school, the self-contained classroom at our home school, and another self-contained class at a school in our cluster. Our vision was for Kimberly to be in a regular classroom with a signing aide and modified work. We felt that this would challenge her academically, provide her opportunities for socialization, and enable her to model appropriate behavior patterns. From my observations of the self-contained classrooms, I was concerned that she would learn inappropriate behavior and would not be challenged academically to meet her full potential.

Kimberly was placed in the Kindergarten class at our home school with a full time aide. She also received Occupational Therapy and Speech Therapy and instructional time with a Learning Disabilities teacher. As the year went by we discovered that the teacher was not willing to modify work for Kimberly, and she had very low expectations for what Kimberly could learn. No attempt was made to include Kimberly fully into the class.

Kimberly’s aide was expected to take care of her completely. With Kimberly’s poor fine motor skills, much of the Kindergarten work of cutting, pasting, coloring, and writing, was beyond her abilities. Kimberly has always had behavior problems, but in this kind of environment, the behavior problems worsened. The situation became more difficult when Kimberly’s aide was frequently absent.

When the teacher did interact with Kimberly it was usually because of Kimberly’s poor behavior. At that age, Kimberly was thrilled to know that she had done something to elicit a response, even if it was anger, and she would become very happy and laugh in the teacher’s face. The teacher was unable to hide or control her anger. She would put Kimberly in time out and be verbally very abusive to her. Of course, Kimberly would see how angry the teacher was and think it was very funny that she had created this response. Kimberly would laugh at the teacher some more, and the cycle would continue.

At the end of January, we realized what was happening and determined that we had to remove Kimberly from that class. We looked at the self-contained classrooms again, but were still not satisfied. We decided at that point to homeschool her. The school’s counselor was a very competent woman who truly wanted what was best for Kimberly. She proposed that we continue Speech Therapy, Occupational Therapy and Learning Disability services while homeschooling. These teachers were all wonderful with Kimberly and we agreed to bring Kimberly in for these services.

Whereas Kimberly has difficulty with the activities that require fine motor skills, intellectually she is very smart. At school they were satisfied that Kimberly could spell “Kim”, and they were not willing to attempt anything beyond the alphabet.

When I began homeschooling her, I immediately began teaching her how to spell “Kimberly”. In one week she had mastered her first name. The next week we began learning “McIntosh”. In one week she had learned that. I then began teaching her to read a few words. I used picture cards and word cards that she would match. We practiced signing the words and fingerspelling the words. She was soon matching the cards and signing the words. After she had mastered 10 words, I took a list of these words to her Learning Disabilities teacher and asked that she drill Kimberly on these words to see if Kimberly could identify them outside of our classroom at home.

This was a turning point for us because it demonstrated to the school personnel that Kimberly was capable of more than they thought, and it demonstrated to them that we have a good understanding of what Kimberly can do. Now, four years later, Kimberly still receives services from the same Learning Disabilities teacher, Speech Therapist and Occupational Therapist. I can go to them and tell them that I think Kimberly is ready to move onto something else, or I want them to start working with her in a certain area, and they will do it. They may look at me like I am crazy, but they will try it. In a meeting a little over two years ago, I told them I wanted Kimberly to have spelling words like typical kids have. They were quiet for a few minutes and then said “OK”. Three weeks later one of the teachers told me, “When you said you wanted Kimberly to have spelling words, I didn’t think she was ready for that. But you were right, she is doing great with them.”

After about a year of homeschooling, I was ready for a break. I had heard about a class at a school near our home (but not in our cluster) that had a Multiple Disabilities classroom with a new energetic teacher and all young children about Kimberly’s age. I made arrangements to visit this class. As I sat in the class I was overwhelmed by how right it felt. The children were nearly all 5-7 years old; Kimberly was 6 at the time. They were doing work exactly at Kimberly’s academic level. The room was bright and cheerful. The children were happy and mostly cooperative and attentive to their activity.

To get a second opinion, I asked that the counselor at our home school visit this class. She, also, was very impressed with the class and felt it would be a good place for Kimberly. She completed the placement request for us and submitted it to the district office.

I don’t suppose that we will ever know why the district office was opposed to this placement, but they were. The placement representative for our school adamantly refused to allow Kimberly to be placed there. For weeks we talked, pleaded, and argued with her. We were finally referred to her supervisor, the Director of Exceptional Child Education. She requested that we place Kimberly back at our home school and gave us permission to structure Kimberly’s program however we wanted it. After much discussion, we agreed to this arrangement.

We devised a schedule that included the services she was already receiving, Speech Therapy, Occupational Therapy, and Learning Disabilities Services, and added time spent in a regular first grade class and time spent in the self-contained class. By this time the self contained classroom had changed somewhat and was being taught and managed more appropriately. It is rare for children in our district to receive special needs services through both a self-contained classroom and the Learning Disabilities classroom. Attempts are made to include all children with special needs in a regular classroom for at least a small part of the day.

Although we had the plan in place, we still had a very big problem. Kimberly needed an aide with good signing skills. By this time Kimberly’s sign vocabulary had increased tremendously and none of the teachers were comfortable with the idea of having her in their classroom when they could not adequately communicate with her.

Enrolling Kimberly in the public school system should have only taken a few days, but because of all of these problems, it took 4½ months, half of a school year. After about two months we started looking into requesting a due process hearing because the school district was violating the IDEA law. Kimberly’s rights to a “free, appropriate, public school education” were being denied. A due process hearing is handled like a court hearing, so we wanted to have a lawyer represent us. I made numerous phone calls to attorneys and advocacy offices trying to locate an attorney who would represent us. We were unable to find anyone who was knowledgeable and willing to represent us.

Since we were unable to locate an attorney, we requested mediation. Through mediation we were able to obtain in writing some commitments that would resolve some of our issues. Other issues were still somewhat vague as to how they would be handled.

When Kimberly did begin back at school, it was a rather rocky start. The aide that had been hired quit after two weeks. (Hiring and keeping good aides is an ongoing problem in nearly all of our special needs classes.) Our struggles and pursuit of mediation and due process had made enough of an impression on the school district staff that Kimberly was first in line for substitutes when her aide was absent.

The following school year Kimberly had seven different aides; not counting substitutes that filled in a day or two now and then throughout the year. Needless to say, she made very little progress that school year. Because of the turmoil that this inconsistency caused, Kimberly spent most of her time in the self-contained classroom. This classroom was low on students that year, so Kimberly received a lot of personal attention from the teacher; however, academically, Kimberly was much more advanced than the other children in the class. It was during this year that the teacher came to me and told me that Kimberly really needed to be in a more advanced class. The irony of it being that the class we had tried to place Kimberly in the year before was a more advanced class.

The following year the school district was able to hire a new aide with signing skills who is absolutely wonderful! She has been with Kimberly for two years now. With the consistency and continuity this has provided, Kimberly has had two wonderful years academically and socially. Over these two years we have been able to move our focus from having a competent aide to Kimberly’s educational program.

Kimberly currently spends about 2 hours a day in the Learning Disabilities Resource Room with a small group of children who work with the Learning Disabilities teacher for Language Arts. She spends about 1 hour a day in the self-contained classroom where she receives math instruction, her weakest subject. The rest of the day is usually spent with a regular class that is a combination of first and second graders. During this time she has Social Studies, Science, Lunch, Recess, Art, Music, Library, Physical Education and Computer Lab.

Technically, Kimberly should be in the 4th grade this year, but since special needs children receive 3 extra years of school, we chose to use one of those years in the elementary grades. So, we held her back in the 3rd grade this year.

Kimberly has been in several different regular classrooms over the years. Some of the teachers are just not able or willing to put forth the effort needed to integrate children with special needs into their classrooms. Since Kimberly’s aide goes everywhere with her, it is easy for the teachers to avoid responsibility for her. Little things like whether Kimberly is invited on field trips or to the class’ holiday parties, clue us into whether she is really a part of that class or just a visitor.

I was talking just this week to a friend who has always held firm that her son be fully included in the regular program. She said that looking back on his elementary school days, she now realizes that he was physically present in the classes, but he and his aide were actually an island in the midst of the class. I thought about how true that is. It is something to think about and watch for.

We have learned many things over the years, but in many ways more questions have been raised than answers. Is inclusion really the best? How do we achieve inclusion? Is Kimberly truly integrated? Does the teacher want Kimberly in her class? Does the teacher’s attitude match her words? Is the teacher willing to modify the work? What is Kimberly learning? What do we want her to learn? Where can she learn this best? Is the class work beyond her abilities to the point that it is meaningless? Is the work so easy that she is bored? Where is Kimberly comfortable? Does she feel stress when she is in a regular class where the expectations are higher? What do we see as her future beyond school? Is this preparing her for that future?

These are questions that I ponder. The only conclusion that I have reached that works for me is to look for the teacher or teachers who are willing, able and committed to teaching my child. Having the right teacher has become more important than what the class looks like or is called.