Learning Through Lived Experiences
The following post has been written by IOB Mentor and Guest Author, Dan Janssen (pictured in the top-left corner of the above image).
April was a pretty special month at Islands of Brilliance. While other organizations may have celebrated Autism Awareness Month, we changed it up a bit to something more powerful, more intentional. IOB kicked it into high gear and launched Autism Action Month.
Our goal: to help change perceptions people may have about individuals living with autism while celebrating our wonderful students and their achievements.
A big driver of our students' successes is the support they receive from IOB mentors. Dan "Nemo" Janssen is one of these awesome people who dedicates his time, energy, and passion to the Brilliant Breakfast Club (BBC).
For this month's Notebook post, we asked Dan to share his thoughts about his time as a BBC mentor. The young adults he supports are sharing their thoughts about independence through a unique lived experience model.
Read more about what that means and how this community is unlike any other.
1. How do you think IOB is supporting the autism community?
Any community–no matter the background or its reason for being–has huge diversity within it. No one organization can fulfill every need for every member. Many organizations look at the range of needs and may focus on one side or the other of the extremes.
IOB aims to support youth who have received an ASD diagnosis and fall within the wide range of the verbal portion of the autism spectrum. These individuals may otherwise slip through the cracks or go unsupported because they don't present as 100% classically autistic, 100% neurotypical, nor even fitting the classic expectations of having Asperger's syndrome. IOB provides opportunities for students to receive acknowledgement for their abilities, encouragement through their challenges, and normalization of their experiences.
As a mentor within the Brilliant Breakfast Club (BBC), I have had the fortunate opportunity to witness many "a ha!" moments or instances where a thought or feeling has made an impact on the participant. These moments provide acceptance. Participants don't feel separate. They realize there is so much we all have in common. It's a community.
This normalization of experiences translates into greater self-confidence and lower anxiety. The group can then more easily empathize with each other and celebrate each other’s individuality.
2. How has your experience with IOB changed your view or perspective as a parent of a child living with autism?
My experience with IOB has given me real-world examples that help me worry a little less about my children's futures. Conversations with students, other mentors, and staff have shown me that all kids–no matter who they are–will go through things. It's easy to fall into the traps of trying to be "perfect," "normal", or even "being right." But these are unattainable for everyone. As a parent, I can learn and adjust in order to meet my children where they need support.
Everyone will make mistakes or take wrong turns in life, but we can learn and grow from those experiences and support one another. This is all just part of life and worrying could distract you from the good things. We all have the chance to keep making the best choices we can, be as kind as possible to others and ourselves, and find happiness where we can.
3. How do you think the lived experience model leads to community-building within BBC?
The lived experience model is the foundation for building successful communities. Models that may be more direct or instructional can create inequality between people. The classic teacher and student scenario has inherent qualities that relegate the student to having a deficit of knowledge. The lived experience model allows both sides of any conversation to have something of value to bring forward. Being valued is the simplest way to describe acceptance. Mutual acceptance and appreciation is the start of community.
BBC mentors feel a part of this community too. We're creating a comfortable environment together with the participants. We aren't approaching this from an authority figure position–it works both ways. The mentors help jumpstart the conversation, but once it's going, at some point, everyone hears something that resonates with them and makes them want to share.
For example, in a recent BBC discussion, the topic focused on challenges. A participant shared that he loves animals and dreams of opening a zoo. But he isn't just dreaming it, he's putting the wheels in motion to make it a reality. He's carefully thinking through the steps needed to achieve this goal. Part of that planning includes preparing for challenges he may face. He's not afraid of failure and understands he may need to change his plan if necessary. But what was great is that he shared his passion and fortitude with the group–to witness it was inspiring for everyone.
These participants show up for one another. Not because they have to or because a parent signed them up, they do it because they see everyone in the conversation as peers and friends; as a community of support for each other.
4. What value do you hope to bring to the BBC participants?
I hope that everyone I interact with has the opportunity to change their minds about something–about themselves, about being open to listening, and learning.
I have diagnoses of ASD and ADHD, as do others in my family. I did not receive my diagnoses until my forties. My world view and definition of self has changed throughout my life over and over again by meeting people and being exposed to new information.
In a past BBC conversation, I remember seeing a change like this in one of our participants. This young man liked to engage and speak. After I shared something about my own life, I could see his facial expression change to a smile. He recognized something in himself that was similar to my experience and wanted to share it with the group. He felt comfortable.
I hope to make others feel heard, feel valued, and be able to share our stories with each other to all grow towards being our best selves.
About the Author
Dan has been a mentor with the Brilliant Breakfast Club (BBC) since 2020. Recently diagnosed on the spectrum, he was looking for a volunteer opportunity where he had the chance to help, listen, and talk with older students living with autism. While getting this news as an adult is very different than as a child, he knew he could bring a unique perspective to BBC. And if you've had the chance to listen in on those conversations, you'll quickly realize Dan has a wonderful way of connecting with students. When he's not volunteering with IOB, Dan loves spending time with his wife and three sons.