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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Creativity…Are you learning how to say something?

Matthew waiting for the reveal and the picture

Matthew has been exploring his creative side for the past several weeks with his ipad that was donated to him for Christmas. Along with the many apps that are available nowadays for kids with learning disabilities, the ipad features the ability to take pictures. Matthew uses the camera to capture a mental list of photos he has created in his head. We do not know what this list is and he can be seen running after his ipad when something comes along that is picture worthy on his list. One morning Matthew was parked in the hallway of our home with his ipad in camera mode. This position is not foreign to us and neither was the ipad so I did not think much more about the scenario…until I heard the scream coming from the bathroom. Next on Matthew’s picture list was mom getting out of the shower! He was in waiting like a seasoned paparazzi for the perfect shot. He went away frustrated. The rotation went like this: curtain closed, ipad on the ground…sound of curtain opening, ipad at the ready for the shot…ipad noticed, scream, shower curtain closed…repeated several times until dad stepped in and distracted Matthew enough for mom to get to the bedroom.

His creativity was further explored a few days later as he dropped his pants in the middle of the living room floor and proceeded to step over and hover above the ipad…thankfully he still had a diaper on! He is still seeking that picture and tries every few days or so to cross that one from his list.


What is our reaction to this new “creative expression?” We are completely thrilled! Matthew is using all kinds of skills as he targets his next photo on his list. He dangles items above and in front of the camera and creates all kinds of different pictures with the effects features such a solarizing, black and white and other enhancements.

I am currently reading a book by the title of Imagine: How Creativity Works by author Jonah Lerher. In this book Jonah explores how creativity works. The best climate and surroundings for creativity both as an individual and how best to be creative as a group. It was very easy for me to follow this book and found myself nodding in agreement as I flipped the pages. There were some interesting quotes and stories I though I would share a few as. They have been very timely as I have gone through this book and as we are watching Matthew express himself.

One example of creativity and how it is fostered in the New Orleans community is a creative arts center that students go to as an addition to their normal school setting. The morning is spent at their various regional “normal” schools and the afternoon is replaced with an environment that fosters creativity…here is an excerpt from their web page: The New Orleans Center for Creative Arts is a regional, pre-professional arts training center that offers students intensive instruction in culinary arts, dance, media arts, music (classical, jazz, vocal), theatre arts (drama, musical theatre, theatre design) , visual arts, and creative writing, while demanding simultaneous excellence.

Jonah spent several days with Kyle Wedberg, the CEO of NOCCA and the students who came from all different social and economic backgrounds. Jonah had this conversation on the last day of his visit…this is an excerpt from the book:

“On my last day a NOCCA, I spent a few hours in the auditorium surrounded by five hundred extremely excited students. The kids were getting ready for interlude day, their chance to perform for one another. The range of expression was stunning…I struck up a conversation with Tiffani, a dance student. I asked her if she planned on becoming a professional dancer. ‘Probably not,’ she replies. ‘I love to dance – makes me so happy – but dancers make no money. I want to make money.’ I then asked Tiffani if she thinks her dance training will still be useful. Wouldn’t it be better to go to a regular school? ‘Oh, no way,’ she says. ‘Im not just learning how to dance here. It might look like that when you look at our classes because we are always dancing. But that is not it. What I’m really learning is how to say something.'”

I think in a way we can all learn from Tiffani…we all have something to say…and we are all at risk of being lulled into thinking that we have no creativity or art in us. Years of fear and not wanting to be laughed at or ridiculed for trying something new has paralyzed that part of the brain that fosters creativity. As I grew up I’m sure I would have been labeled with ADD (Attention Deficit Disorder), and probably still could today. My mind is always moving from one project to another…to some it may look like chaos, to me it makes perfect sense and can already “see” the finished project in my mind…I just need to create it. I have other fears, but being creative is not one of them.

As we have raised our kids we have always, within reason, allowed them to try all kinds of things that they were interested in as a way to build their creativity. One of those things was allowing them just to play. Play is actually really hard work. I watch our youngest daughter, Sarah Anne when she plays she gets really intense and her focus sharpens on whatever she is doing as her imagination takes over. This is another excerpt from Imagine: How Creativity Works :

“When children are allowed to create, they’re able to develop the sophisticated talents that are required for success in the real world. Instead of learning how to pass a standardized test, they learn how to cope with complexity and connect ideas, how to bridge disciplines and improve their first drafts. These mental talents can’t be taught in an afternoon – there is no textbook for ingenuity, no lesson plan for divergent thinking. Rather, they must be discovered: the child has to learn by doing.”

What about you? Are you, like Tiffani, learning to say something? God has gifted all of us with many gifts, abilities and talents. Are you using them to their fullest? Are there gifts you haven’t discovered yet? Gifts, abilities and talents are not just limited to the arts…there are many other ways to create and to serve others around you by: being handy, mechanical aptitude, computer savvy, good with managing money, organizational skills…just to name a few. All of these things are useful and meaningful ways to be creative. God expects us to use the gifts and talents he gives us…and one day he will ask us what we have done with what he gave us.

“Each one should use whatever gift he has received to serve others, faithfully administering God’s grace in its various forms”  (1 Peter 4:10 NIV).

If you happen to see Matthew with his ipad don’t forget to smile! It also would be helpful to be fully clothed as well…

ISAAC UPDATE: We can all be thankful, through your constant prayer, Isaac is doing remarkably better this week. He is settling in with his trach tube and is back to full continuous feeds. We still have a long haul before we come home with him…both in his healing and our readiness in getting our house prepared for his medical needs. We need to do some modifications for living arrangements to allow for nursing care and for equipment. We are also going to need a bigger vehicle! With Isaac’s equipment and adding his Kid Kart wheelchair to Matthew’s, we have outgrown the Toyota Sienna if we want to travel together as a family without taking two cars. Please pray for Isaac to continue to grow, heal and for the Troupe’s as we mentally and physically prepare for Isaac to come home…sometime during the middle to end of July.

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