Last August, our blog introduced you to Mark and his family, which found Colorado’s Family Caregiver program to be a perfect fit for everyone involved. Mark’s sister, Sonja, brought Mark into her home and assumed the role of Family Caregiver for him when his previous Host Home Provider retired. Her son, Ethan, became his uncle Mark’s SCC coordinator.
Outings and enrichment activities, referred to as Supported Community Connections (SCC), are often managed through agencies that offer day programs. Through Evergreen Service Provider’s SCC program, a family member or friend may be designated to coordinate SCC activities for an IDD adult, which typically broadens their opportunities significantly.
As with family caregiving, Ethan was required to meet criteria and complete training to qualify for this position. Together, Sonja, Ethan, and Mark plan Mark’s SCC monthly activities, tailoring them to meet Mark’s specific needs and likes.
Ethan’s perspective on Intellectual and Developmental Disabilities (IDD) is quite unique, as are his thoughts on how IDD Individuals can most meaningfully and effectively be integrated into their community. He has agreed to share his unique story and his view, as seen through a different lens.
Many things about Ethan are noteworthy. He is articulate, courageous, inspiring, a talented artist, well-read, a lover of learning, a thinker, and – he has a diagnosis of autism. Although he is typically careful about disclosing that he is on the spectrum, he is willing to do so because he feels it may help not only people living with IDD and autism but – perhaps even more so – those who are not.
Autism is often hard to diagnose because the spectrum is so broad, and it impacts people in many different ways. Ethan has had some struggles of his own. He shared that, “In elementary school I was bullied immensely. It was mostly verbal, not physical, but it hurt. In fifth grade, I was given my own separate desk in the classroom, supposedly to help me concentrate, but it was incredibly embarrassing to me. I think the teachers were well meaning, but they made it very obvious that I was different. If they hadn’t, I wouldn’t have been made fun of so much. There’s a fine line between helping someone and making them into a pariah.”
Ethan has had to overcome a lot and feels that his experiences give him “an understanding and unique perspective that someone who’s not on the spectrum might not understand.”
He shares his views that unnecessary polarization exists in our society which may perpetuate some of the stigmas that are attached to disability, and that there seems to be a tendency to keep disabled individuals separate rather than integrating them into the mainstream. He has praise for the SCC program and the work he gets to do with his uncle because its purpose is to address that separation and integrate Mark into situations where he meets and interacts with people who don’t have the same disabilities.
He adds, “Rather than being seen for the disability, people should be seen as people first. People have different talents and skillsets and should be celebrated for what they are good at. We are all different and that’s not a bad thing – it’s a beautiful thing. If we were all the same the world would be a boring place. Our unique gifts are meant to be shared.”
Ethan is an advocate of support for people as they are integrated into the community and mainstream opportunities but believes it can and should be done in a way that is not humiliating in the process. “I think the SCC program is remarkable. A lot of the training was about respecting the individual with the disability and treating them with dignity – which they absolutely deserve. It’s very straightforward and works well for me and my uncle. It offers a lot of flexibility in terms of respecting my uncle’s wishes. Much of what we do is up to him, as it should be, because my uncle is an adult.”
Ethan’s experience shapes a lot of what he does with Mark, and he credits his uncle with having brought him out of his shell. “We share a very strong bond,” he said, “we always have. He’s honestly one of the most positive people I know. He’s very sociable and has a genuine love for people. He doesn’t seem to care what people think about him, but people love him as soon as they meet him. He helps eliminate some of those stereotypes.”
Ethan and Mark are proof that “disabilities” are not disabilities and, as Ethan says, “we all can make a huge difference if we use our gifts.”
Of his work as Mark’s SCC coordinator, Ethan affirms, “It’s a really good thing for both of us. We encourage each other. It’s definitely the best job I’ve ever had – I love this work. And having that flow of income allows me to pursue some artistic endeavors. I’d say I’m a pretty happy person. The sky’s the limit!”
Each member of this family seems to have found their gifts and how to use them, along with joy and fulfillment in contributing. Ethan said more than once that it’s most important to him that what he shares helps someone. We feel confident it has and will and thank him for his courage and willingness to be so open.
If this situation might be a fit for your family member or loved one, visit our Family Caregiving page for details, or contact us to learn more about our SCC program.
