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A Doctor Told Us to Lower Our Expectations for Our Son With Special Needs. Here's What Happened Next.

A Doctor Told Us to Lower Our Expectations for Our Son With Special Needs. Here's What Happened Next.
You’re sitting in the neurologist’s office. You’ve just been given the diagnosis for your child: Autism Spectrum Disorder. You’re in shock, and feeling more than a little fear.

And then the neurologist tells you something like this: “Your child won’t be ready for first grade. And don’t plan on college, either. You need to lower your expectations.”
 
This happened to Mark and Margaret Fairbanks, co-founders of Islands of Brilliance, an organization that serves kids on the spectrum through a mentoring program that fosters creative skills through technology by pairing them with a professional from the creative community.
 
    
                                    Mark Fairbanks                           Margaret Fairbanks

But back then, the Fairbanks were just like any other parents who had been handed this diagnosis. Their son Harry hadn’t even turned three yet. They’d been full of plans for the present and future. And now a doctor was telling them something like this.
 
Lower your expectations.
 
“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,’" recalls Mark, adding that as a parent, he was already going through fear and heartbreak.
 
Now he was feeling anger.
 
“How could they predict what our son was going to be capable of?”
 
Connecting with Harry’s world
For the Fairbanks, that determination also meant they were in for an ongoing struggle. Connecting with Harry was often a challenging experience that changed from moment to moment.
 
That is, until Margaret experienced a breakthrough in perspective and understanding:
 
“For many years Harry lived in the world of trains,” Margaret remembers. “And all of our teachers and support staff 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.”
 
That’s when Margaret realized that while she and Mark were struggling to communicate with Harry on their level, Harry was already communicating with them—through his trains.
 
“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 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,” Margaret says, “and we connected for that moment, and I realized that a way to reach him was to go into his world.”
 
What if we captured what kids are really interested in?
As Harry’s boyhood progressed, the Fairbanks were comfortable enrolling him in neurotypical activities like Little League, but as Mark observed, these events were often tentative and unengaging for the participants.
 
“I remember going to the game, and there were about 30 kids between the two teams, but none of them really seemed interested. And I realized that these were really kind of ‘guard rail’ programs for kids with disabilities, and wouldn't it be nice if there was a program that actually captured what their interests and abilities were?”
 
Bringing two worlds together
While Mark was wishing there were activities and programs that would appeal to Harry and other kids with special needs, he noticed something else: Harry’s increasing involvement with technology.
 
Harry would spend hours online watching stop-action animation and posting comments on YouTube. Mark was struck with how such a seemingly simple activity proved to be such a level setter for Harry, a place he felt safe, a place where he could communicate, interact, and explore.
 
Then he realized this important fact:
 
Harry could accomplish things with technology he would not ordinarily be comfortable doing.
 
“The real key [appeared when] he was with me; I was getting my oil changed,” Mark explains. “I had my laptop with me, and I'm working in Adobe Illustrator on a Saturday morning, and he said, ‘Dad, that looks interesting. Can I try that?’”
 
Back at home, Mark showed Harry how to use Adobe tools and then gave him alone time to create. He’ll never forget what happened just a half hour later.
 
“Dad, come look what I did.”
Harry showed his dad a drawing he’d done of a Thomas the Tank Engine character, using professional grade software he hadn’t even known about a half hour ago.
 
“He figured out how to use tools in there that I hadn't shown him how to use yet,” says Mark.
                                           Harry's first software drawing of Thomas

That’s when the lightbulb went on: Harry had crossed over into Mark’s world. And all it took was the right approach with the right tools.

Mark sums up his epiphany: “Area perseveration, then subject matter expertise, one-on-one mentoring, technology, software: Here's a program that captures what these kids are really capable of. So it was Islands of Brilliance.”
 

The first class
After nurturing and building on the idea for a couple years, Mark and Margaret were ready to launch the Islands of Brilliance pilot program. And were they ever nervous! They knew well what worked for Harry—but would the same hold true for other kids on the spectrum?
 
Their fears were unfounded. After working with their students that first day, the mentors were blown away by their sheer creativity and engagement.
 
The second week of the program reconfirmed that promising start. All of the students showed up early, found their mentors, and began working before the class had even officially started.
 
“Now you juxtapose that with the Little League game where none of the kids were really interested. Here they're interested. They're engaged. They're showing focus. They'll work through the whole class. It was like, ‘Wow, this thing really works!’” remembers Mark. “That was just the beginning, and the classes have kind of grown and grown since then.”
 
  
                                                  Islands of Brilliance in session

Islands of Brilliance today
Three years after that first Islands of Brilliance session, the program is a resounding success. Pilot programs have been started in Minneapolis and Portland, Oregon. Chicago is joining the list in late 2016.
 
While optimistic, Mark realizes there will be administrative challenges when the Islands of Brilliance concept breaks on a national level. “Once it goes into Chicago, we'll be getting requests for it to go to cities that we may not be able to be in all at once, so we'll have to figure out, not how to clone ourselves, but . . . how we get it started and then how it becomes sustaining,” explains Mark.
 
The groundbreaking idea everybody should know
Islands of Brilliance yields awesome visual results, and the projects are definitely fun for mentors and mentees alike. But it’s the deeper, intangible experiences that will last in the hearts and minds of the participants: learning and enhancing social skills, talking and making friends; building confidence; sharing and presenting creations; and the sheer power of the collaborative experience in a safe, friendly setting.
 
At the heart of the idea is a wonderful realization.
 
“They might have kids who are a little higher needs or a little higher functioning. That doesn't really matter. They're accepted, and guess what? They're sitting next to a person who's a professional, but they're the expert,” says Margaret.
 
 
A classroom experience which begins with a student who is quite possibly uncomfortable or painfully out of place and ends with an artist beaming with a new-found identity as a subject matter expert is an island of brilliance unto itself.
 
To learn more and get the in-depth story of Islands of Brilliance, tune in to the CPI podcast with Mark, Margaret, Harry, and CPI’s Creative Director Matt Juzenas, one of the first Islands of Brilliance mentors.

Examples of completed work:
 

 
                   Lego/Zombie/Warhol                                       Adventure Time 
                   Student: Alec Schwarz                                    Student: Ava Cavanaugh
                   Mentor: Barb Paulini                                       Mentor: Cat Guinan
 
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