Note: April is National Autism Awareness Month.
Just like any other school day, Eugene, my son with autism, left on the bus this morning to go to a day program provided by our school district. For the last 20 years, he and I wait for the bus by sitting on our front porch. As he steps on the bus, he shouts at me with his happy high-pitched voice, “Bye Mom!” This is our ritual to begin each new day, to meet that day’s challenges, emotions, promises and hopes.
In June this year, he will age out from the district program. I cannot help being emotional whenever I think about his first day of preschool and the journey that Eugene and our family have been on since then. On that day, I cried in the car for two hours after separating from my miserable, crying child.
Since that first day, school has been a challenging place for both Eugene and me. While Eugene was learning the alphabet and phonics, I studied the never-ending list of special education acronyms.
Just like other special education moms in this world, when my child cried about his school work, I wept on my steering wheel, but when he was happy in school, I felt like I had the world on a string. At times, figuring out how to navigate the world of special education for our son with autism while struggling with his atypical behaviors seemed like a brutal mission for a family like us, and we often felt we were not understood, not just because of our heavy Korean accents
However, our fundamental concern has not changed in these 20 years, and that is to help our son reach the final destination for his journey – Eugene being able to live an independent and inclusive life in the community. Of course, this is the same concern shared by thousands of moms and dads who have children with disabilities.
As a family we have had to adjust the sails of our ship quite a lot to reach this destination. We had to get past phrases like “below average range” or “socially maladjusted” since they were not helpful in steering the path for our son. As a family, we now see more clearly the incredible strengths and positive qualities of a young man who is able to say proudly “I am a person with autism.” We have learned that it is more helpful for us to make sure that Eugene is in the center of all service plans than putting systems first and having him fit around these systems.
Because of putting Eugene at the center, we have become more efficient in figuring out how to change the world around us and finding the resources we and Eugene need to reach our goal. As Eugene grew, our family grew too and our minds opened up to the new experiences that our son brought us.
I am not completely positive about Eugene’s future in the community. I see and feel the gaps between how my family and how society see the possibility of Eugene becoming a “successful” member of the community, and how we define success.
Many people still have a difficult time moving away from the stereotype that measures people with autism and other developmental disabilities as a social cost. However, I also believe that our society is moving in a better direction, becoming more able to envision a person with a disability as a valuable asset.
We have witnessed the notably increased capacity of our schools and workplaces to accommodate individuals with disabilities since the first form of the Individuals with Disabilities Education Act became law in 1975. These accomplishments were not possible without the sacrifices and efforts of so many parents, educators, and leaders of this country. Today, their legacy continues through the next generation of families, educators, and leaders, and it only expands as we as a family sail toward the final destination of our journey.
The next three months will be an interesting time for our family. Frankly, it makes me nervous thinking that Eugene will no longer be in the classroom. There will be no more IEP meetings to attend and no school buses to pick him up.
Eugene and our family know that this is a start of the next stage of journey. However, this time, Eugene will be the captain of the ship, steering us toward that goal of independence and community inclusion. This time, I am not crying; I will take a deep breath to prepare myself for another thrilling sea of possibilities and opportunities.
Young Seh Bae, Ph.D. is Executive Director of Community Inclusion & Development Alliance (CIDA), a federally funded Community Parent Resource Center in Queens, New York. She was a faculty member of Teachers College, Columbia University, and served as president of Korean-American Behavioral Health Association.
Cross-posted at the OSERS blog.