Scott is a young man with autism in Fairmont, Minnesota. He lives in a residential program of REM Heartland, a part of The MENTOR Network. When he was very young, his parents Pam and Roger realized he wasn’t hitting certain milestones, such as sitting up or speaking. Scott was the youngest of four children, with two brothers and a sister, and he seemed to be a happy child. He loved music and responded enthusiastically to it, and when the Twins won the World Series in 1987, he celebrated right alongside his family. But he didn’t seem to respond to verbal or nonverbal cues, and at 18 months, he hadn’t yet spoken. Once again, Pam and Roger brought him to the doctor’s office, who referred him to experts at the University of Minnesota for further tests. All the tests came back negative; there wasn’t anything physically wrong with Scott. At age 3, as his behaviors became more challenging, Scott was diagnosed with autism.
Around that time, at the advice of a county case manager, Pam began looking into in-home supports for Scott. In addition to his behavioral challenges, Scott rarely slept through the night and required around-the-clock care. After doing extensive research and speaking with the case manager and other parents, Pam reached out to REM Heartland, and at age 4, Scott first began receiving services through REM. Staff members visited him at home and provided behavioral and daily living supports on an hourly basis.
Pam and Roger have always been Scott’s biggest advocates. As he got older and it became clear that Scott would require residential services, Pam knew she wanted REM to provide them, and he has been with REM ever since. During his school years, Pam had to make her voice heard to ensure that the school system did what was best for Scott, which could be challenging. “I never would have known about advocacy if it hadn’t been for Scott,” said Pam. “He taught me how to be an advocate for someone with a disability. His Dad and I were the constants in his life, and we wanted him to succeed in the long run.”
Over the years, Scott has made tremendous progress. He has formed strong bonds with his REM team members Jackie, Sharon and Christie. Their relationships with Scott are built on trust and understanding, and with their help, he has learned the skills of daily living, such as doing laundry and other self-care tasks. He has had a number of jobs and volunteer positions, including delivering newspapers, working at the local Red Rock Center for the Arts, and volunteering at a nursing home, where he set up tables, filled the pop machine, broke down boxes and more. All the seniors at the nursing home knew Scott and looked forward to his visits. Prior to the pandemic, Scott loved to go swimming at the local Holiday Inn and go to the movie theater. And to this day, he still loves music.
Through it all, Pam and Roger have remained involved, and they’ve seen his growth firsthand. “REM is so easy to work with, and great at listening to our concerns,” said Pam. “Things are much easier now than they were when he was in school.” She praises the care he receives from REM’s direct support staff: “Jackie has been with him since he moved into his current house. She loves him; she takes him to her house for holidays, brings him to church with her dad. He relates well to Jackie,” said Pam. “Sharon and Christie are also great. They will seek out new ideas and information about autism and share it with me. They’re always looking for ways to do what’s best for Scott.”
COVID-19 curtailed a number of the activities and outings that Scott was used to, as well as visits with his family. As it was for many individuals with autism, adapting to a new routine during the pandemic was challenging for Scott. He had to stop going to church every weekend, where he would visit with Pam; both of them missed this time together. However, he has adapted admirably, and just like the rest of the world, Scott has gotten really into baking during quarantine. Pam and Roger adapted as well, visiting him when they can, even if that means walking down the street to wave to him through the window.
It is important to take time to remember how much we can learn from individuals with autism, and how much stronger our communities can be when everyone’s unique contributions are accepted, acknowledge and valued. This is especially true for Pam and her family—she is the first to acknowledge the profound influence Scott has had. “He has taught me a lot, and I’m so thankful,” said Pam. “I have two great-nephews with Down syndrome, and though the experiences are different, there are similarities, and it’s been wonderful to be able to share experiences.” Scott has influenced his sister, too: “His oldest sister loves spending time with him,” said Pam. “She became a nurse working for people with acute mental health issues, and I believe part of that decision was due to her experience growing up with Scott.”
“What I love the most is all he has taught me,” says Pam. “It’s a joy to be Scott’s mom.”