This article was originally published in the book "Fully Included - Stories to Inspire Inclusion" and is shared here with permission from the authors.
By Jennifer Dillon
When my daughter, Reese, was born with Down syndrome, one of the first things I promised myself, my husband, and Reese was that we would not treat her differently. We would take her home and create a plan that would allow our hopes and dreams for her to have a fully included life to not waiver. And that is exactly what we did.
When I returned to work, she went to daycare with typical kids. We went to mommy and me classes in our community with typical kids and families. As she grew older, we enrolled her in swimming, dance, and gymnastics classes with typical peers. When the time came for her to start elementary school, my plan for inclusion remained the same. The only thing that was different was that I knew if I was going to advocate for Reese to be educated in the same classroom as her typical peers, I was going to have to know my stuff.
I began the journey to immerse myself in the topic of inclusion. I read every word of the state and federal regulations, I attended workshops, and I became familiar with important terminology like "least restrictive environment" and "supplemental aids and services." The work paid off when our IEP meeting for kindergarten went relatively smoothly. The IEP team agreed with my request for a general education placement and Reese was enrolled at our neighborhood elementary school. I was elated!
However, kindergarten came with unexpected challenges. A kindergarten classroom is a busy place with a lot of kids, noise, and distractions. Reese struggled with behaviors and maintaining attention to tasks. In my weakest moments, I questioned if a general education classroom was the right place for Reese. Perhaps there were benefits to a smaller classroom environment where she would be with kids with similar learning needs. However, I knew in my heart a special education classroom would not provide the same level of peer modeling and friendships that would prepare her for life. When I saw how she modeled the behaviors of her typical peers and accelerated in her learning and development, I knew inclusion was right and we needed to stay the course. Of course, it was going to be hard, but I was prepared for the challenge and in that moment I made the commitment to do whatever it would take.
Our IEP team met again and we began to look at what supports and services Reese needed to be successful in a general education environment. She was given a one-to-one aide and behavior plan that incorporated a reward schedule and movement breaks. We ended kindergarten on a positive note. Reese had made a tremendous amount of progress over the school year. We were all so proud of her!
However, our situation was not perfect. As is the case in many school districts, ours was drastically understaffed and underfunded. The writing was on the wall—there would be hard-fought battles ahead in order to be a strong advocate for Reese if she was going to get the supports and services that she needed and deserved.
As luck would have it, Reese's father was offered a job that would move us to a state with a good reputation for disability services and education, and we jumped at the opportunity. While we knew that moving 1,400 miles to a new home would have challenges for Reese, as well as our entire family. Still, we arrived at our new home full of hope; however, our hope was short lived and the call to be a strong advocate continued. Reese was immediately placed in an integrated co-taught class at an elementary school within our district that was not our home school. We were told that each grade level had one integrated co-taught class and it was housed in whichever elementary school had the most students requiring a co-taught classroom. In addition, because students come and go, there was always a chance that the co-taught class would be moved to different schools from year-to-year. It simply broke my heart to think that Reese would not be able to attend the same school as her younger brother when he entered school. I went back on the advocacy train to prove that a special education program should follow the child rather than the child having to chase the program.
Still they had not thrown their best shot yet when only three days into the school year I was asked to come to the school for a meeting to discuss some challenges they were having with Reese. I expected we would share some strategies to help Reese adjust to her new environment and plan for our upcoming IEP meeting. Instead, I was introduced to another program that the district offers for students that require higher levels of support. When I asked about this programming, I was told that it was a self-contained classroom where Reese's only exposure to students without disabilities would be during lunch, recess, and specials. They had made this determination after only knowing my child for three days. I firmly, yet kindly, told them that I was not interested in their program and we agreed to adjourn until our regularly scheduled IEP meeting.
That next IEP meeting, and each of them for the next two years, was three hours long and focused on pages and pages of their documentation on what Reese could not do and never what she could. It was clear that the school did not feel Reese belonged in an integrated classroom, and the battle was all uphill to prove her worthiness to be educated alongside her typical peers. They continued adding more services and supports and cited her need for these services as further evidence for a self-contained placement. Reese's days were filled with data collection of her every behavior and movement. Instead of aides and paras helping her, they were documenting her days at the expense of her education and social development. She lost interest in learning and school and the stress took a toll on Reese and on our family. She became withdrawn and lost interest in activities that she used to enjoy, like ballet class. Her frustrations grew, and so her behaviors did too. She spent a large part of her day in the hallway refusing to re-enter the classroom. I saw the pain in my child's eyes and I thought about how it would feel to have my every move documented. How would it feel to go to a place every day where nobody believed I belonged? I knew that I could not longer send her to school. So, I made the difficult decision to homeschool her. It took our family a long time to heal from her experience at this school. Homeschooling had many benefits; however, I knew that there was a part of Reese that truly missed the social aspects of school.
As luck would have it, Reese's father was offered a fantastic job opportunity within the next two years. The thought of packing up our life again and moving was daunting; however, we welcomed the opportunity for change! I began researching the area and specifically researched school districts and their inclusion practices. I came across a school district website, and they shared my vision of inclusion. This time I enrolled Reese and her brother at our neighborhood school. Together! She was automatically placed in a general education classroom and assigned to a learning center for additional support, if necessary.
Reese now spends the majority of her day in a general education classroom. She receives some push-in special education services and some pull-out services in the learning center. Her general education teacher views Reese as a true member of her classroom. She emails me often to brainstorm ways to support Reese academically. Reese has developed friendships in both her general education class and the learning center. Her work is modified, and she receives accommodations to help her succeed. She is graded on her modified work, not on grade level expectations. She even made honor roll twice this year! Our IEP meetings are collaborative and I feel like I am a true member of the team. Our meetings are focused on Reese's strengths and how to support her academic and social development. Most importantly, Reese LOVES going to school again. She knows that she is part of the community and that she belongs.
Our journey to inclusion has been long, exhausting, and emotional. I have doubted myself on many occasions and wondered if inclusion is the best for Reese. I've learned a lot about inclusion and how to advocate for Reese. I've had to look long and hard at my goals for Reese and my vision for her future.
Schools that value inclusion value the social development of their students just as much as they value the academic achievement of their students. Schools that practice inclusion look at each individual student's needs and do not make placement decisions based on diagnosis or classification. They start their IEP meetings with discussions about the supports and services that the student needs to be educated in the same classroom as their peers without disabilities, rather than beginning the discussion with why the student needs a self-contained placement. They recognize that all students learn differently and that all students need support to learn. Their IEPs are strengths based rather than deficit based. They don't sweat the small stuff when it comes to behavioral concerns and understand that sometimes less intervention is better.
Inclusion takes a village, but the benefits are well worth the effort! These schools are worth waiting for, worth searching for!
Jennifer Dillon is a mother of two children. Her daughter, Reese, has Down syndrome. She hopes her story will inspire others to continue advocating for school and community inclusion.