[Blogger’s note: I’m noticing how some of the text in this post is now obstructed by imagery or broken up since WordPress reset its image settings. I apologize; try to stick with it! If you find it too difficult, though, please let me know in a comment: I seem unable to simply adjust the images, so I would need to rebuild the post. Thanks very much. ~ Ray, April 2014]
My son, Nicholas Thurman Jackson Hemachandra, has some significant challenges.
First, he has a really long name.
Then, he is the smartest, handsomest, bravest, kindest, sweetest, most innocent, most connecting, most loving, and most willful person on the planet. And it isn’t easy being all that; it’s essentially like being Superman.
As it happens, Nicholas also is autistic. So, to many people, much like Superman, he really isn’t of this planet.
Nicholas is, to use a phrase a professional friend has said to me, mid-range autistic, not moderately so. His autism expresses itself in ways that are not hidden and have significant impact on his functioning and life. So, the ways in which all his stupendous characteristics manifest themselves are mostly unusual, and people don’t recognize them. And that’s okay: He is, after all, just a regular guy once he puts on his glasses, Clark Kent and all.
Seriously, he is just Nicholas.
Well, Nicholas Thurman Jackson Hemachandra.
Nicholas juggles, swims, goes to sleep-away and day camps, plays in an assisted baseball league, mostly gets higher scores than I do at Simon and Tetris, rides a scooter, zip lines, plays Angry Birds, and has playdates with longtime friends with whom he shares great mutual affection. He adores riding roller coasters and driving go-karts. He loved his one trip to New York City. He hikes to waterfalls. He likes watching musicals: Into the Woods and Little Shop of Horrors, especially. He enjoys listening to Billy Joel, Imelda May, Frank Sinatra, Bruce Springsteen, Neil Diamond, late Johnny Cash, Sam Cooke, Holly Cole, Holly Near, and now Ellie Goulding, pretty much in that order. He sings with me and laughs heartily when I get things wrong, in song and otherwise, which I have to say happens increasingly more for Pa Kent than for Clark himself. He is primarily in a regular-education classroom in sixth grade with a 1-on-2 aide. In this school year’s first grading period, he made A-B honor roll.
Nicholas has done so well that it’s important to take the time to remember where he has come from in the expressions of his autism, and where he continues in many ways to reside, as he still has many of these characteristics, albeit that now express themselves in different ways:
- Global developmental delay
- Severe speech delay and impairment
- Communication delay and impairment
- Socialization delay and impairment
- Self-injury (head banging, scratching, stabbing repeatedly with a pencil, mostly not seen in a few years)
- Tantrums (mostly not seen in a few years)
- Sensory integration disorders, including years in which he literally would only eat a few specific — very specific — foods and would indeed starve before venturing further out; extremely heightened sensitivity to different kinds of sound, light, touch, crowds
- Obsessive interests and fears
- Enormous dependence on the familiar (people, places, structures, schedules), even as he has worked hard to improve his flexibility
- Significant cognitive limitations (by objective testing even quite recently): an MR co-diagnosis
- Obsessive compulsive disorder (also a co-diagnosis)
Someone I have loved and respected for a rather long time wrote to me (at least partly spot on, too) in a personal exchange yesterday, “You have an intensity that is going unchecked.” It was not meant as an insult, and it was not meant as a compliment. I mention it here because Nicholas comes by his OCD naturally, obviously, and indeed he has an intensity that really only is “checked” against his will — and also, paradoxically, only by the strength of his remarkable will can he truly check it, when he chooses to try to do so out of generosity, mostly to me and my requests of him and, rightly or not, for him. (Even as we have nearly countless sound-healing tools positioned around our home, and the phrase “deep breath” is one Nicholas has heard more times than just about any other.)
But this post isn’t about Nicholas’ journey, a source of limitless lessons and richness for me and, I am told in gratitude, sometimes for others. Nor is it a testimonial to the many — oh so many — people who make and have made such differences in his life. My gratitude to them is boundless and eternal.
No, this post is about the photo I ran at the start of the piece.
I have been invited to do so many trainings and panels about autism — for educators, medical professionals, college students, camp counselors, and of course parents — that at some point I came up with this idea for a visual aid.
Oftentimes when a family member talks about an autistic child, they bring a photo. It personalizes. It humanizes. With the cute little ones, it melts hearts, or at least softens them.
For a handful of years, Nicholas has played in the Ted E. Tourist Assisted Softball League run by the incredible folks at Asheville Parks & Rec and sponsored by the Asheville Tourists. Each year, the kids have photos taken, and somehow that year one of the “bonuses” for a photo package was having the main photo turned into a jigsaw puzzle.
The metaphor of the jigsaw piece in autism is fairly universal symbology at this point: the ribbon of the Autism Society, the main logo of Autism Speaks, the main logo of the Autism Society of North Carolina (we live in North Carolina), and so on. The Autism Society, in describing the ribbon in that link I shared, says, “The puzzle pattern reflects the mystery and complexity of the autism spectrum. The different colors and shapes represent the diversity of the people and families living with the condition. The brightness of the ribbon signals hope — hope that through increased awareness of autism, and through early intervention and appropriate treatments, people with autism will lead fuller, more complete lives.”
So when I present to a group or as part of a parent panel, this is the photo of Nicholas I take with me and pass around. I seal it in a plastic pouch, so the pieces don’t crumble all about. There is great strength in the interlocking pieces, yet still a fragility to the entirety. And I emphasize that, to me, each and every piece is necessary to make this beautiful picture of Nicholas’ life complete and whole, even as he is complete and whole and perfect all on his own.
Most of the pieces of the puzzle, of course, are people, as I wrote earlier. And, oh my, that jigsaw puzzle indeed has literally thousands of pieces. And, thanks to them and thanks to Nicholas himself, the puzzle expands and enriches each and every day.
I tried to drag and drop some photos from the past few years of Nicholas in the baseball league to give a little feel for it at the end of this post but, while still re-learning WordPress, it dropped them all over the place. (I hope the puzzle theme still works.)
If you enjoyed this article, please, I ask you to share a link to it on your social media channels to spread the word. Please comment, as well.
- Top 10 List: Things to Remember When Working with Autistic Children or Other Children with Special Needs
- The Egg Chair
- Autism and Grief
- The Autistic Spectacle
- Roads Not Taken: Lessons in Autism, Inclusion, and Life
Thank you very much for your interest and engagement. I truly appreciate it.