All too often, families are often forgotten when teams of educators and professionals become so narrowly focused on supporting their students with disabilities. Particularly in special education, we become so engrossed in finding ways to support our students with disabilities that we forget support isn’t what we believe is helpful but what the families and children believe is important to them. Educators would benefit from taking the time to sit back and listen to families to hear about their perspective, experiences, values, fears, and goals. It is in these moments of understanding that professionals can truly provide individualized care that is family-centered and deeply successful. That is why when graduate students in the special education teacher preparation program wanted to invite the author of a memoir they read in one of their courses we jumped on this incredible opportunity.
This past month, I was honored to work with colleagues in the Speducators Network, a student organization at the University of Illinois at Chicago associated with the special education department, to pull off a Sped Talk panel discussion titled, “Through Their Eyes: Families and Autism.” We invited two parents of adults with Autism to share their experiences raising their child throughout the years. The room was packed with educators and families who sat in awe, stunned by the families’ resiliency and love for their children.
Bob Hughes, the author of Running with Walker: A Memoir, was intriguing as he shared his experiences raising his son Walker. He implored us to see individuals with disabilities as people first who are just as uniquely wonderful as everyone else. He was particularly fond of how Sheldon in the television show, The Big Bang Theory, was never explicitly labeled with Autism and was welcomed into a group of friends who understood him and treated him as friends do with sarcasm, jokes, and support. He said nothing could have prepared him for raising a son with Autism. As parents, him and his wife found themselves being forced to become vocal advocates for their son to help others understand him and see him for who he was, instead of what developmental milestones he was or was not hitting.
Jerry Eichengreen, the mother of an adult performer with the Red Kite project, shared her experiences with raising her son with Autism. Her family is featured in the full length film, The Red Kite Project. While she described the wonderful teachers that worked with her son, she lit up when telling a story about the first time she watched her son’s humor emerge during his first improv class where he shined with a one-liner to a friend that was unexpected and genuinely funny. She described “actors as natural communicators” so in this environment, her son’s language jumped. Her pride was palpable in what she has seen him become and the future that lies ahead of him.
Ultimately, both parents described Autism as a spectrum of characteristics that look different in each child. We can not falsely believe that a one-size-fits all approach to working with students and families will work. Bob Hughes reminded us of the commonly used phrase, “if you’ve met one person with Autism, you’ve met one person with Autism.” If you can remember one thing as a professional working with children and adults with disabilities, remember to sit back and listen to what they have to say and move forward together from there.