by Leia Holley
As I stood in front of my class, I had no real idea of how much this diverse group of learners would teach me. This was my first class. I was a teacher, their teacher. I knew how to teach math, but I was unaware of how little I truly knew about teaching.
My task was to teach Basic-Basic Math to ninth graders ranging from 14 to 19 years old. How hard could it be to teach sixth grade math to ninth graders? Little did I know that the majority of my students were ‘slow learners’ or ‘didn’t want to learn’. These were the kids no one else wanted to teach. To be honest I did not want to teach this class either. I hoped this was a stepping-stone and that next year I would be teaching ‘real’ math: algebra, trigonometry or geometry.
I struggled daily to teach basic arithmetic to my classes. A ‘seasoned’ teacher pulled me aside and said, ‘don’t beat yourself up over these kids, most of them are learning disabled and will never learn even the most basic skills.’ I must admit my response was ‘then why are they not in special education classes’ I’m a high school math teacher, not a special education teacher.’
I had spent time substituting in those classes down in the basement or behind the gym. The ones many ‘on the outside’ were not aware existed; the classes for ‘disabled students’. That was my experience with the ‘students who couldn’t learn basic academic skills.’ They were nice kids, but they were different. (It was 1990 and I had never heard the term IEP, Individual Education Plan.)
Book learning was not an option for the majority of these students. They needed something more than just examples on the board and oral instruction. I spent my first year ‘playing games’ and teaching ‘life skills math’.
It wasn’t until three years later that I would realize who the real student was that year. As I stared into my two year old’s beautiful blue eyes, and the doctor said the word I had heard so many times during my first year as a teacher: ‘NEVER!’ ‘He will never again talk, have normal eye contact or be a functioning member of your family,’ the pediatric neurologist words echoed in my head and heart. I had a flashback and visualized my son in ‘those classes’.
My heart was breaking not only for my little boy but also for those students. My son would never hear that word again; I would never allow my son to be one of those ‘disabled students’ who was hidden in the dark corridors and back classrooms. But how could we keep our son from becoming just another hidden child down a dark corridor’ My husband and I knew nothing about disabilities let alone autism.
As far as we knew Sean was the only child in Junction City, Kansas who had autism. The first few months I withdrew into his world. We had teachers, and speech therapist and an occupational therapist coming into our home yet Sean made no progress. His private speech therapist struggled to keep him in the therapy room.
I was haunted by visions of ‘those classes’ I had substituted in four years prior. I couldn’t let that happen. I truly believed there was a little boy inside that shell of autism. I remembered the student who taught his (my) class to convert time from the 12 hour clock to a 24 hour clock by moving chairs into a circle. Each student represented a number. That simple act taught his peers and his teacher that true learning is in doing and teaching. He was the real teacher.
I taught Sean to give me ‘five’ by making it a game. Through over exaggerated expressions, song and movement, he was able to learn. He could learn; I could teach him.
As parents of an ‘autistic child’ we journeyed through three new worlds: medical, educational and autism.
We truly believed that the best way for Sean to learn was through real life experience. Preschool was fairly easy as the program was a reverse inclusion based classroom. By including ‘normal peers’ in the ‘special preschool’ Sean had the best of both worlds.
We found ourselves having to defend our decision not to follow other families and fight the local school district for applied behavioral analysis. Again the words ‘he is autistic, you have to deal with it or he will never” this time they came from other families with ‘autistic children’. Our ‘problem’ was we didn’t see Sean as an ‘autistic child’ we saw him as a child with autism. He needed to be a kid and he needed help to break out of the isolated world of autism.
Sean was learning in the preschool setting. The steps were small but he was stepping out of his world into ours a little more each day.
During his preschool years we educated ourselves on his medical needs and educational rights. Knowing our rights and his needs enabled his father and I to work as a part of Sean’s school team. We struggled at points with the school district, but were able to ensure his needs were met and he was progressing.
At the time I truly believed that parents who let their children be placed in ‘those classes’ had given up on their child. Armed with the Individuals with Disabilities Education Act (IDEA), we were prepared. Our son was going to be a kindergartner with his peers. His para-educator from preschool would continue to support him.
My heart raced as I drove my baby to his first day of kindergarten. I held my breath and tried to fight back tears as we walked into the classroom. As each child took their seat and waved goodbye, moms and dads wiped tears of joy and apprehension from their cheeks. A few reluctant mothers lingered helping their children put away their supplies. Tears streaming down my face, I felt a hand on my shoulder. ‘He’ll be just fine, we know how to work with kids like him,’ the kindergarten teacher said. What did she mean ‘kids like him” I wasn’t crying because my ‘autistic child’ was! I was crying because it was my baby’s first day of kindergarten. I was just a mother of a kindergartner. As I turned to leave, I saw tears streaming down Sean’s and his para’s faces. They looked so lost.
What were we thinking? We made the crucial mistake of dumping Sean and his para into a new environment. Sean was the first ‘autistic child’ to be included. I knew more about autism than anyone on the team. His para knew nothing about being a kindergarten para; she was his preschool para. There was no real plan as to how to meet Sean’s individual needs within the kindergarten classroom.
An emergency IEP team meeting was called. Most of Sean’s team members truly cared about Sean and wanted to do whatever it took to help him. The bomb dropped though, when the kindergarten teacher stated ‘he is like having an animal in my class. He yells.’ It didn’t matter that he only yelled when he was in the gym or restrooms, ‘like all the other kindergartners’, he was ‘an animal’.
At the time, Sean was attending half-day preschool and half-day kindergarten in different schools. To better meet his needs his team decided to continue the morning preschool and focus his afternoons on individualized instruction and preparing his new school team to meet his needs. Sean spent much of this year in the hospital due to illness.
We approached a new school year, with great apprehension. With a new kindergarten teacher, an autism specialist and training for his para and team, Sean’s kindergarten year was a true learning experience. Through kindergarten and the first half of first grade we included Sean in ‘small’ parts of the day. The goal was full inclusion, but the objective was to enable him to experience success within the general education setting.
Trust, open communication and a team who understood our dreams for Sean enabled Sean to become an important part of his school.
A military move in the fall of Sean’s first grade year brought new adventures, new struggles and great victories to our experience with the education system. We had searched and found a school district and community which, we believed, would meet our family’s needs. I had chosen this school because of elements of programs and I truly believed the educators taught from the heart.
Our dream remained the same, our son didn’t change, and his IEP didn’t change yet our world did. We had just moved and believed we knew what worked for our son. This new team had elements of knowledge and experience which would truly benefit Sean and yet, they didn’t know Sean. They didn’t see him as an autistic child; they saw the child. We didn’t believe they truly understood his individual needs. Roadblocks went up when we heard the words ‘budget’, ‘staff shortage’, ‘we can’t do that’, and/or ‘he’s not the only student we have who has these problems.? Looking back I can’t say where the first mistake was made or who made it, all I know is that once the miscommunication and mistrust began, it started an avalanche.
We spent our first year firing off flaming letters to his IEP team and the district asking for ‘prior written notice’. By the end of the school year it was no longer an issue of what Sean needed but of who said what, when and where. We, his team, had let adult issues come between Sean and his education. He felt the tension and mistrust as evident by his behaviors.
The last meeting of that school year the majority of his team members were in tears. I looked across the room and in my mind kept asking ‘why did we move here, why did we buy a house and why had his dad agreed to commute to work each day for this’? My heart kept saying ‘this is the place; you have to find a way.’
I knew the law and knew we both had legitimate legal arguments. It became a matter of who had more proof/documentation, but where was the common sense? Where was our son in all these adult issues? He was slipping away, back into the autism.
That summer my husband and I did a lot of soul searching and decided to follow my heart. We needed to bring the focus back to Sean and his strengths and dreams. With help from KU Neurological Support Project and Families Together, we were able to help Sean’s team better understand his strengths/needs and our dreams. We were fortunate that Sean’s second grade teacher has a sister who has autism. She was a key element in bringing the team back to the table with her insight as a sibling and as a teacher.
It was not an easy process; trust is not built overnight. Sean’s second grade year was a building and learning process for him and his team. I did find a key element to meeting Sean’s needs is asking his team ‘what do you need’? All along we were focused so intently on Sean’s needs we had overlooked the key elements of what was needed for individual team members to meet these needs. We assumed if it was written in the IEP, everyone on the team understood it and knew what they had to do. The number one need for his team was open communication.
As parents we know Sean’s legal rights to a free appropriate education, but we are also aware that Sean is leading the way for so many other children with disabilities. Sean is one of the first students with autism to attend Bonner Springs Elementary.
Recently, I asked his third grade teacher if she needed anything or if there was anything I could do to ensure Sean was successful in her class and that his peers were still getting their education. She laughed and said, ‘He is easier than the sixth graders I taught last year. He listens.’ Sean is learning to make friends, social skills, reading, writing, math and love. His peers are learning to make friends, compassion, sign language, patience, acceptance and love.
Sitting at the top of the bleachers, the tears once again stream down my face. Yet this time I am a mother watching my third grader and his classmates in a music program. As I scan the students dressed in clown hats and make-up, I see my third grader. I have great difficultly finding the three students with autism among the 57 third graders. They aren’t ‘autistic students’. They are third graders who just happen to learn differently.
Now before each IEP meeting, we don’t worry about what the school may be ‘hiding/planning’ or how they will respond to our newest ‘demand’. With open communication, trust and a focus on Sean’s strengths and dreams, his TEAM is able to teach from the heart.
Many parents have asked where our sons attend school, parents wanting to move to the best program for their child. I explain it isn’t the program, it’s the team and teams aren’t built overnight. For a child to truly succeed, parents and the school must work together understanding that least restrictive environment is the law, but inclusion is life and life requires trust, open communication and shared dreams.
While we still dream of the day when Sean will be fully included in his school and community, we understand the least restrictive environment for Sean is a balance between a special education classroom and the general education setting.