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Strike Up the Band - Ryan and the Family/Community Connection

I recently read through my personal journal from the year my son, Ryan, was a sophomore in high school.  The journal entry from Friday, October 14, 1994 read:  

“I had an amazing experience with Ryan yesterday.   His high school had a home football game last night, so the students in the band had to be at the high school by 6:00 PM.  Ryan began to put on his band uniform around 5:00.  It’s quite an outfit, considerably complicated with lots of zippers and snaps.  When he was finished dressing, he beamed.  He is proud of playing the cymbals and being part of the band: band class is the best part of his school day.  I dropped him off by the band door just before 6:00 and he said, “Bye, Mom...see you later!”  Without a backward glance, he shut the door and ran to the band room.  I had tears in my eyes as I watched him.  I had a sense that I was participating in a miracle—a miracle, which, 17 years earlier when he was diagnosed with Down syndrome, I would have bet my life could never have happened.  I had the thought last night that it would have been very fitting at that moment to see a banner over the band door reading, ‘Welcome to the World, Ryan Banning.’”

Even today, 20 years later, I can still see that moment in my mind’s eye.  It felt like the culmination of a tremendous amount of hard work and advocacy. You see, Ryan was born in 1977, only 15 months after PL 94-147 (the federal law mandating a free and appropriate education for all children) was passed.  As the law was implemented, two separate educational systems quickly emerged—general and special education.  As a result, Ryan spent the first 12 years in segregated, self-contained special education classes for “trainable mentally retarded” children.  During his elementary school years, I began advocating with increasing intensity for Ryan to be educated with his typically developing peers.  The educators at his school almost always met those efforts with equally fervent, and often angry, resistance. I continually asked myself, “Am I wrong? Am I asking too much? Am I unrealistic?”  Everything in the educational system said that, yes, I was wrong—that I should accept the status quo.  I hated being perceived as a troublemaker.  Finally, after years of fierce advocacy on my part and on the part of a small group committed to Ryan’s inclusion, he was given the opportunity to be in some general education classes at his high school.  Band was one of these classes. While Ryan never experienced the full inclusion I dreamed of, he did experience—for a short time—a sense of belonging in his school.

Fast forward to 2013, when I had the privilege of observing what I perceived as another “miracle”—one that I never thought I would see in my lifetime.   I was part of a research team that visited several schools that had been selected by the SWIFT Center for their inclusive educational practices and for demonstrating aspects of the ten SWIFT features. At these schools, I was amazed to witness the type of inclusive education that I had only dreamed of, where all children learned together in the same classroom and participated in the general education curriculum.  

I facilitated focus groups with families of children—with and without disabilities—who attended these schools.  Trusting family partnerships is one of the SWIFT foundational features and, in these focus groups, family members described their partnerships with educators at the schools and the factors that influenced these partnerships.  Many people I talked with had children with disabilities who had previously attended schools with segregated classrooms, and they spoke passionately about the positive relationships they had with the staff at their child’s current school.

What factors did these families think fostered trusting partnerships with school staff?  They talked about the importance of a principal who is a strong, effective, and involved leader with great expectations for students.  They emphasized frequent, respectful, and reciprocal communication with their children’s teachers. And they focused on meaningful opportunities for involvement at their children’s schools, such as being on the school leadership team.   

But the strongest message of all, a message that was repeated time and again, focused on the culture of the school.  Families said trusting partnerships with educators thrived because their schools were communities of openness, acceptance, and appreciation where everyone, including students, family members, and school staff, were valued and had a sense of belonging.  Being valued and belonging did not have to be earned; they were the unconditional rights of those who were a part of the school community.  

Witnessing my “miracle” gives me hope for a future when all schools are restructured so that we no longer distinguish between general and special education, when all students and family members have a sense of belonging in the school community, and when family members and educators have trusting partnerships and are reliable allies in the quest for meeting the individual needs of all children. 

Afterword

Ryan is now 37-years-old and is a valuable member of his community.  He has lived in his own home for 15 years with housemates who do not have disabilities.  He owns a vending company and maintains his vending machines with the help of his parents and a job coach.  He pays taxes.  He is a weekly volunteer at Meals on Wheels and works out at a local gym.  He loves playing video games and going fishing.  He plays basketball on a Special Olympics team.  He is an enthusiastic sports fanatic (although, he is sometimes a “fair weather” supporter as his allegiance seems to change with a team’s winning record!).  He is learning to read through support at our local university.  He has come a long way from his segregated “trainable mentally retarded” days.  Ryan has full citizenship in his community.

- Martha Blue-Banning