Carolyn Hayer is the Director of Parent and Professional Development at the Statewide Parent Advocacy Network (SPAN) in New Jersey, a federally funded Parent Training and Information Center.
There was a time when I couldn’t even say the word out loud. It was too painful, too devastating to utter. I wanted to believe that if I didn’t say the word, it didn’t exist. But it does exist; it’s real, and it’s beautiful, and it’s challenging all at the same time. And whether I say the word or not, my son Chris has autism.
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.
April is Autism Awareness Month, and a perfect time to highlight the OSEP-funded Project Autism Spectrum Disorders (ASD) at the University of Central Florida (UCF). Since 2004, this innovative personnel preparation project has been addressing the critical need for special educators prepared to serve the increasing numbers of children identified with ASD. A nationwide listing of teacher shortage areas revealed 48 states reporting shortages of special education teachers for the 2016–17 school year, with many states identifying the specific need for special educators prepared to serve students with autism.
Dwayne, Julian, Martina and Jared Ballen. (Photo courtesy of the Ballen family.)
A few years ago my sons Julian and Jared attended tennis camp at the University of North Carolina. During the camp’s awards ceremony, tennis coach Sam Paul announced that counselors and campers unanimously agreed Julian clearly won the category for best attitude.
Coach Paul quickly realized during the camp that Julian, who has autism, was not at the same athletic level as other campers, many of whom were younger and more skilled. At the same time, he had something valuable to contribute.
Coach Paul took the time to not just “look “but “see” Julian, and what he witnessed, he later told me, left an impact. No matter the task facing Julian, it was always carried out with a smile and cheerful readiness. He also noticed the positive effect Julian’s presence had on other youngsters.
A number of the campers began to take attitude cues from Julian. In a couple of instances, a potential tantrum was replaced with a more reflective, and productive reaction. It was the Julian effect in full flower.
What Coach Paul engaged in that week was inclusion. He had no professional training for it, nor was he necessarily pre-disposed to do so. He simply wanted Julian to have the same experience as the other children attending camp. Inclusion should be practiced throughout society and not just confined to those areas where special programs and trained professionals are in place.
My brother Michael provided another clear example of inclusion during our family’s 2013 Thanksgiving gathering at his house. During a post-meal trivia game, Michael announced that he wanted Julian as his partner. The subject of the afternoon was Disney trivia. Michael was acutely aware of Julian’s passion for all things Disney, especially the animated movies and theme parks.
Julian, full of excitement and a staggering amount of Disney knowledge, was the star as he and my brother destroyed a team comprised of five other family members. Michael, a municipal police department official, found a way to bring his nephew out of the corner and to the table of engagement. All it took was recognition and desire. That is inclusion.
My wonderful wife, Martina, and I have always believed that inclusion is a full family endeavor that takes all forms. Julian does the same amount of chores his brother Jared does. If one takes out the trash then the other is expected to roll out the recycle bin. Julian is expected to clear his dinner placement and put the dishes in the washer. He has responsibilities that fit with his capabilities, just like his brother. This too, is inclusion.
I’m hopeful that we all consider opportunities to practice inclusion in everyday life. It begins with the simple idea of, “When you look, make sure you see.” It’s also important to understand that inclusion is not just a one-way street. Those being included often have something to teach us about ourselves and the human community. I’m sure Coach Paul would wholeheartedly agree.
As we approach the end of the school year, most high school seniors are preparing for graduation and their future. At this time, I’m reminded that each passing year, more and more students with autism and other disabilities are attending college with their peers. For many of them this will be their first time away from home, a time for excitement and a time for independence. It will also be the first time where they will be responsible to advocate for their own needs at school.
The transition from high school to college can be tough, especially for students with disabilities; however, when students know their rights and where to get help, the transition can be made a little easier. Some students, such as Elijah a high school senior from Jacksonville, Florida, learn the importance of advocating for themselves and their needs for accommodations while still in high school. Here is his story and his wish for all students with disabilities.
A student’s ability to advocate for himself is important to succeed at the college level. Every year, I have an opportunity to meet and work with a group of about 15 autistic college students from various backgrounds and ranging in age. Some of them are traditional college students, others are accessing college through a Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID) program or a modified course of study. All of them say the same thing – it can be hard.
Part of my job at the Autistic Self Advocacy Network is to provide incoming students with training in self-advocacy through our Autism Campus Inclusion program and give them the tools and resources they need in order to effectively advocate for themselves and get the most out of their college experience.
Under the Americans with Disabilities Act of 1990 and the Rehabilitation Act of 1973, colleges and universities are required to remove any barriers impeding the student, whether these are architectural, communication related, or transportation and to provide reasonable modifications to rules, policies, or practices. It is, however, the student’s responsibility to know his or her rights and how to advocate for appropriate accommodations. These accommodations could include:
Wearing noise-cancelling headphones in class,
Using laptops for note-taking
A place to doodle, fidget, pace, or sit on the floor in order to focus and learn.
Live in a single dorm room, even as a freshman if needed
A quiet testing space
Alternative formats of classroom materials, textbooks, and tests
Autistic and other students with disabilities will often face barriers from the day they set foot on campus. In order for these students to succeed in college, we say, self-advocacy is needed. You have to know your rights, have a plan for getting the accommodations and modifications that are appropriate and needed, and be prepared to face an array of challenges. However, by creating a community on campus and bringing students together to share their experiences we remind one another that self-advocacy is easiest when we know we aren’t alone.
The opinions expressed and materials contained in this blog are not an endorsement by the U.S Department of Education and herein do not necessarily reflect the position or policy of the United States Department of Education.