Podcast: Autism Mentoring Program Islands of Brilliance Celebrates Special Gifts
Host Note
In practical terms, the Islands of Brilliance program provides an opportunity for kids on the spectrum to develop their creative and technical skills by working one-on-one with a professional mentor from the design community. Utilizing each student’s area of perseveration as a starting point, together these creative teams work on visual projects utilizing Adobe Photoshop and Illustrator (and sometimes paint, canvas, and other tangible material) to produce colorful posters and other artwork.
In terms of the heart, however, Islands of Brilliance is a labor of love, brought about by one couple’s intense desire for deeper communication with their son Harry, who is on the spectrum. Through their striving to develop a greater connection with him, Mark and Margaret Fairbanks seized upon an idea that blossomed into a thriving entity for creative artists to inspire each other through the unique dialog of collaborative art.
This interview features both Mark and Margaret describing the heartaches as well as the breakthroughs and triumphs associated with developing their relationship with their child and then with the Islands of Brilliance program. Their son Harry joins the interview as well, bringing an informed, youthful perspective as an advanced student of the program.
Rounding out the interview participants is Matt Juzenas, CPI’s creative director and one of the first mentors to volunteer at Islands of Brilliance. Matt’s firsthand take on the incredible successes achieved through the program brings alive the developmental progress that these one-on-one sessions help to produce and sustain.
Three years after inception, the Islands of Brilliance program is an evolving success story. To understand how it all came about, read the blog post, A Doctor Told Us to Lower Our Expectations for Our Son With Special Needs. Here's What Happened Next.
Guest Biographies
Mark Fairbanks has over 25 years of experience working in advertising, design, and digital agencies and is the co-founder of the design firm Translator. He brings his background in visual and user-centered design to develop curriculum as well as the overall experience of Islands of Brilliance. Mark’s standing in the creative community is a great draw in recruiting both professionals and college students interested in volunteering for the program. When not occupied with Islands of Brilliance and Translator, he finds meaning and art spending time on the flower gardens that surround the Fairbanks family home.
Margaret Fairbanks earned her Master’s degree in Special Education from the University of Minnesota and for the last six years has taught at Whitefish Bay High School, serving students who have the most severe needs. In her role of lead teacher at Islands of Brilliance, Margaret goes to great lengths to ensure that students have a successful classroom experience. After reading through all applications, Margaret contacts parents and talks through the format of the class to make sure that any additional supports, such as providing a written or visual schedule, are in place for every class. She also discusses areas of sensory sensitivity so that students can focus on their projects and not on sensory challenges.
Harry Fairbanks is a senior at Whitefish Bay High school, and a participant in the Islands of Brilliance advanced program.
Matt Juzenas took a bit of an unconventional path leading to his current role as the creative director at CPI. After high school, he studied elementary education with a focus on special education. Just before completing his degree, he left the University of Iowa to switch careers—starting all over again—to study graphic design at the Milwaukee Institute of Art and Design. Little did he know, after 12 years of working in digital agencies, his path would come full circle when special education and design would mash up together as a mentor and creative lead at Islands of Brilliance.
Podcast Highlights
Here are some highlights of my conversation with Harry, Margaret, Mark, and Matt:
On receiving the first diagnosis of ASD for Harry (3:15):
Mark: We sat in the neurologist's office when we were given the diagnosis of Autism Spectrum Disorder, which we never really argued with. But it was more the prognosis, and the verbatim words the neurologist said were "Harry won't be ready for first grade, and don't plan on him going to college, so, basically, lower your expectations." Which, since he was not even three years old, was more than a bit shocking. And actually I think as a parent you're already going through, you know, fear and heartbreak, and this added to the emotions. And it was more of anger because how could they predict what our son was going to be capable of? And I remember looking at them and telling them, "Well, he will be ready for first grade, and we'll be the ones who determine what he's capable of," which is what we went on to do.
Breaking through to Harry’s world (4:10):
Margaret: For many years he lived in the world of trains. And all of our teachers and the support staff that kept saying, "You have to connect with him." And so often with kids with autism, when you see extreme behaviors, it's because they can't communicate.
And that's what we were struggling with, is how do we communicate with him, but he was clearly communicating with trains. He was back and forth, and he would look at their faces and he would have conversations with them. And finally one day I just pretended I was a train, I mean . . .
[To Harry] You remember that, right? You were pretty little. I literally got on the floor and crawled around and went "Beep beep! Hello, Thomas!" And for the first time in I couldn't even tell you Harry actually looked at me. He looked at me, and we connected for that moment, and I realized that a way to reach him was to go into his world.
On Matt’s mentor experience with his student, Tommy (22:17):
Matt: My student that I was paired with that first class was Tommy, and we have actually worked together every class since. So we're going three years later. . . . And there's a couple other mentors who've had the experience of being able to be paired with the same students for multiple classes. So with Tommy it's been pretty great.
At times, especially at the beginning, it was challenging figuring out how to communicate together. Tommy is not highly verbal, and so it was figuring out how do I communicate. Do I write things down? Do I point? Do I just give him more time to process almost to the point, I always say, until I'm uncomfortable and I feel I need to interject? Take one more breath, one more beat. And that's usually right about when all of a sudden he's like, "Okay." You know, and it goes on. For three years we've been working together, and it's always been a challenge to get Tommy to just continue to grow and go to that next level.
And just last week, two weeks ago, we were working and I showed him something. We had to place 14 pictures from his cross country team into his poster. And the first one I showed him, the second one I showed him again, the third time we kind of did it together, and then 4 through 14 he did by himself. And also in the last couple of weeks we've been noticing he has been becoming more and more verbal. And so we were actually having some conversations, albeit small ones. We were talking, which three years later was a first.
On the value Harry sees as participating as a student in Islands of Brilliance (25:00):
Harry: I just think it's pretty neat how . . . the new students get to take their interests and make it into something that they could get a career for. Giving them a, I don't want to be vulgar by saying this, but it gives them a hope of having a career, having a future because they're learning how to do these technological programs, which helps them to have more knowledge.
On the benefits of the advanced Islands of Brilliance program (27:34):
Harry: It feels like you get a lot more freedom, essentially, because it feels almost like your mentor's getting you to really think deep into that project, those kind of projects or programs that you feel like you've got a lot more choices in what you can do than in the normal class. Because most students I've seen have just designed posters. It's like don't they want to do something else? Because they could also design a comic; they could design a movie; they could design a logo; they could design a flag like I am doing. That's why I feel like the advanced curriculum is pretty good because it expands the things you can create with technology.
Examples of completed work:
Islands of Brilliance in session: