Like most parents, we did not expect to have a child with a disability. Our firstborn son Danny seemed fine at birth. However, we soon noticed he wasn’t achieving the developmental milestones at a typical pace. At age six months, Danny was diagnosed with Infantile Spasms. We knew the news was not good when Danny’s pediatrician began crying as he delivered the diagnosis. Neither one of us had ever heard of Infantile Spasms. One of our first questions was how the diagnosis would affect Danny’s education. Little did we know that Danny would have significant intellectual and developmental disabilities.
Armed with a medical diagnosis, we began trying to fix Danny through medication and therapy. Fortunately, one of the medications stopped Danny’s seizures; it also resulted in the loss of most of the motor skills Danny possessed at the time. We continued to follow the advice of doctors and therapists, and Danny attended an early intervention program with other kids who had complex disabilities. Over time, we noticed that Danny was more interactive around other kids. This became even clearer when he attended a preschool with kids who had less complicated disabilities. One day, another mother said that her son considered Danny his best friend. What an eye opener—we had never thought of Danny having friends!
When Danny was ready for kindergarten, the school wanted to place him in “the severe and profound classroom.” We insisted he enroll in a class comprised of kids with disabilities, as well as many different abilities. About that time, I started working at New Mexico Protection & Advocacy and read a magazine from TASH, which highlighted how students with severe disabilities like Danny’s were being integrated into schools. Wanting to learn more, I asked to attend the annual TASH conference and learned how Danny could be included in schools and develop friendships with other kids in regular classrooms. I started educating school staff about what I had learned. At one of the following TASH conferences, I learned a process we could use to transition Danny to a regular third-grade classroom.
During that time, TASH was the only place that provided us with information about people with “profound” disabilities. For example, we discovered the book Individuals with Profound Disabilities, which was very helpful in educating our family and others about what Danny could do. Meeting other parents provided an outlet for information exchange and support—learning what to do for birthday was as important as all the school information.
As a result of our connection to TASH, Danny moved back to his neighborhood school in fourth grade over the loud objections of the principal. However, we knew the law said Danny had the right, and people in the district and our neighborhood supported us. He was able to finish elementary school with his sister, cousin, and friends—old and new.
Danny continued to middle school, and then we moved to Kentucky where he was included in high school. He went to proms, was on the homecoming court and the newspaper staff, and graduated with his class in 2002. The principal was welcoming, and many of the regular education teachers, his special education teacher and support staff from Jefferson County Public Schools were great at figuring out how he could work on his goals and participate in the general curriculum.
As Danny’s school journey came to an end, we began to reflect on what his schooling prepared him to do. From the beginning, he had been part of the school and larger community. He made friends, got invited to parties, played Little League ball with the help of classmates and participated in plays. Doing such ordinary things helped our family live a more regular life.
The next step was for Danny to transition to the community, including college. Using many of the strategies we learned at TASH, Danny did volunteer work and spent time in class and working on a college campus.
What about Danny’s goals? Danny has never learned to hold his head up, reach and grasp, feed himself or use a switch consistently despite the best efforts of teachers, aides, and therapists. What he has learned is to be part of the community. He can socialize and go anyplace. He has traveled to Florida, Jamaica, and Colorado. He is finally staying awake most of the day. He also has been a great teacher about including people with disabilities and has helped us all to use our creativity to make that happen. We realized early on that we were raising a future community member and to the best of all of our abilities and his, we have.