In 2005, two of my best friends welcomed their second beautiful boy into the world, who was promptly named “Gianni.” (I was hoping for “Thomas” of course, but I’ve also heard the third time’s the charm.) Gianni was born with Down Syndrome, and when he arrived, Gianni’s father Doug told me the medical staff didn’t share his parents excitement.
“They said he wouldn’t be able to do the things a ‘normal’ boy would do, like ride a bike.” Doug says. “Well, they were wrong about riding a bike and I’ve learned that ‘normal’ is just a box or a label that people like to use.” Noted Media Theorist Douglas Rushkoff was speaking recently about kids with ADD, and posed: “what if some of the things we’re considering disorders are actually adaptations?“

Things unfold as they should...
That’s an even more interesting theory when you consider the experience that Doug, Gianni, and their family had a couple of months ago. “While shopping this past Christmas we stopped in at a Barnes & Noble and saw both of our boys race up to the Nook display. I was amazed that Gianni grabbed the tablet and started ‘flipping’ pages of the book, touching images and trying to make them larger.”
Doug explained to me that even though he had never handled- or seen- an iPad, Gianni soared through the apps and pages like a seasoned pro. And he’s not alone. There are stories popping up all over about ‘special needs’ kids excelling with the assistance of these new tools. I just started a sentence with “One extremely moving example” but when I went to look for the one I was thinking of on the internet, I lost nearly an hour reading more stories about amazing kids than I could even imagine. Look up “ipad” with “autism” or “down syndrome” and you’ll see what I mean.
Which brings me to another point.
I’m really smart.
No, really. It’s true. I don’t like to brag, but I’m probably the smartest person sitting in this entire kitchen where I am sitting by myself. Well, ok, you know what I mean: as smart as any of us think we are, you know? I read a lot. I study hard. I try to keep myself informed. Don’t we all think we pretty much have a grip on major points?
And… I always thought it was “Down’s Syndrome”. But it’s not just me. I just walked into the living room. Melissa, all college educated and such, just spelled it for me. “D-O-W-N-apostrophe-” Nope. Melissa wants me to point out that she is “really educated” unlike me and is offering to scan her degree and post it. (I told her that wasn’t necessary, that it actually proved my suspicion.) So how terrible is this? Think about it. One of my very best friends in the world has a son, he has this syndrome, and I can’t even spell it.
What should we expect from someone without ANY personal connection?
Even less.
Can anyone reading this tell me exactly what Down Syndrome is, now that you know how to spell it? I bet it’s not as many as Gianni and his parents would hope.
I’m sure not as smart as I thought. By any meaning of the word. (Sorry, Gianni.) So I looked it up. A beautiful little girl who was brave enough to talk about herself on the National Geographic website said “A doctor would tell you the extra chromosome causes an intellectual disability that makes it harder for me to learn things.” She also said “When I first started to work on this story, I thought maybe I shouldn’t do it. I thought you might see that I have Down syndrome, and that you wouldn’t like me.” After reading about Down Syndrome for an hour, those two things, I think, sum it up pretty well. You have a kid who has enough of a hard time in school with being “different” and on top of that, our school systems- no matter how generous with their time or good their intentions- aren’t totally equipped to help any kid with any kind of special need at all excel.

Gianni paints, like his Dad!
So what do I know about Gianni? He likes ray guns. He bounces around the room. He laughs. He likes sports. He loves his family. He rides his bike. He likes to climb things. He’s creative, he loves to draw, and he loves to paint. (It’s in his genes!) He loves to dance, loves music (those are his mom’s side!), and his dad is convinced that he’s written his first two songs on piano already. He loves school, but he hates homework. Sounds like a very normal kid to me!
From his Dad: “He does have difficulty in school like any child. His fine motor skills aren’t where they should be, and it can be tiring for him to write, even for a short length of time. At school he has therapies for speech, and occupational therapy. We also do private speech therapy through the local universities speech clinic.” Doug clues me in further: “At our school district’s special resources group meeting we became aware of the many uses of an iPad for teaching children with special needs and learning disorders…”
Which leads us here: Gianni needs an iPad.
Gianni’s school is looking into apps that they’d like to use with him. Timing is very important and this is an opportunity for Gianni to excel. And while the economic crunches of last couple of years have hit everyone hard across the board, it hasn’t been even remotely kind to freelance illustrators like Gianni’s Dad. And Gianni would really benefit from an iPad. Not a little. A lot. He’s at the age where he can really gain leaps and bounds, more than just struggling to keep up. And who’s to say that this isn’t a blessing in disguise? Why was Gianni so attracted to the mechanism of the iPad? Most adults look at them and scratch their heads, how did this kid grab one and start SOARING with it?
I just gave a TEDx talk about wax cylinders, and contrary to what that might suggest, Gianni’s story is the perfect example of why I’m not ANTI technology at all- completely the opposite. I have a sneaking suspicion that this is a major step forward for us all- ten years ago, kids like Gianni were struggling with something we couldn’t understand- who knows what will happen now that this energy can be properly harnessed and directed forward? I’m fascinated to find out.
It’s been said that “it takes a village” to raise a child. Gianni’s parents need our help in this moment to catch up on the costs of raising a child with Down Syndrome, as well as position his to excel. In return, they would love to open their hearts and home to us, and are going to maintain this blog as Gianni learns- and they learn with him. I can’t wait to see how that unfolds…
The first step is getting the finances to buy the iPad, apps, and proper funding for Gianni’s therapy. So on February 18th, 2012 we’re holding a celebratory event at my gallery, there will be a silent auction, maybe some music (since I can claim the honor to have been onstage for Doug and Daneen’s very first date!) and certainly a lot of good friends and love. There will be food, and drink, and we’ll be posting silent auction items on this blog as the date approaches. If you’re inclined to kick in a little bit for Gianni’s iPad in advance, we’re not charging any admission- or for food or drink, those are all donations as well- you can use the Paypal button at the bottom of this page, and it goes directly into Gianni’s Dad’s account, specifically towards Gianni’s progress.
Mark your calendar, and we’ll see you SOON!
CENTURY GUILD
2041 WEST CARROLL
C-220
SATURDAY
FEBRUARY 18, 2012
7 PM
With love,
Thomas Negovan

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Gianni on the cover of Today's Chicago Parent magazine.