A couple of years ago, Seb, our 5-year-old, was diagnosed with the Autism Spectrum Disorder (ASD). Elia and I were deeply affected by this news, yet we were not quite caught off guard. Although he had been meeting with many of the expected milestones of his infancy, he had gradually regressed, and almost all of those milestones were seemingly forgotten or, perhaps, abandoned. Before he lost his speaking skill, his final words were mama and papa. We had been noticing other signs a few months prior: intense focus on inanimate objects, lack of speech, and extreme separation anxiety during preschool, to name a few. The flapping of his hands at the wrist was his typical emotional response to a wide range situations.
Throughout the past two years, Seb has endured a bevy of therapists, more than I think any child should ever have to meet. He was assessed by several doctors and professionals who set to work on lifting him out of his early childhood depression. Funded in part by insurance, in part by California Department of Disabilities, in part by the California Department of Education, and the rest out of pocket, he has undergone Floortime, Applied Behavioral Analysis, Occupational Therapy and Speech Therapy. Fortunately, he is a quick study and has benefited tremendously.
Seb recovers after a trek around the La Jolla UTC ice skating rink.
In just a few months, Seb went from speaking no words to reading and spelling, and at the time he was barely three years old. Over the past two years, he has made dramatic improvements in so many aspects of his life that, unless you were acutely aware of his history and the telltale manifestations of ASD, you might think Seb is a typical kid–a bit quirky, but, for the most part, typical. Look at him: you have to admit, he is a good looking kid. I mean, you might prefer his father’s green eyes to the dark brown color he shares with his mom, but he looks fine. And with a couple more years of regular, intensive therapy, he will be fine and, hopefully, low-maintenance.
We are the Champions
Elia and I are responsible and in charge of his progression. We let the therapists do their jobs and work their magic, but before we go home, we listen to them tell us how we can reinforce the skills he is picking up. We read through social stories to help him overcome his ritual anxiety. We walk him through morning and nightly check-lists to enable self-care, in which he is taking pride. His ability to speak and communicate has developed so elaborately that we enjoy helping him and seeing him improve. While Seb has worked hard, we have also tried very hard to encourage him to continue with his therapy. We make the work fun by playing games. Because Seb is astutely aware of any abnormality in his environment, we try to exploit this talent as often as we can, to foster creativity and challenge imagination. The games help draw out his focus on his own inner world into a friendly conversation.
Here are a few examples of the games we play:
- One of the first games we learned to play was to leave out a keyword in a sentence or song. For instance, when taking a bath, I used to tell him to get out of the bathtub by singing Bob Marley’s Get Up, Stand Up. I sang it every night, and eventually Seb learned the lyrics and could sing it with me. But instead of singing it together, I would sing all of one line and leave out the final word: “Get up, stand up, stand up for your … “, and Seb would fill in the blank: “Right”. “Get up, stand up, and you don’t give up the … “, and Seb would sing: “Fight”, and we’d follow it up with the mock chord strike.
- Our favorite word game involves speaking common phrases or having typical conversations with him. In one iteration of the word game, we replace keywords with quasi-homonyms. For example, sometimes when prompting him to begin a task, chore or routine, we might say, “Ready, set, go!” But in our word game you can hear the similar cadence as we replace the word set with the word Seb: “Ready, Seb, go!” When Seb hears this and sees our feigned urgency, he laughs and asserts a correction, “No, not ready, Seb, go. Ready, set, go!”
- Another iteration of our word game involves replacing a normal direct object with another funny one. As in, when we are eating chicken nuggets, we might say, “Okay, Seb, are you ready to eat chicken plates?” Of course, no, he is not going to eat the chicken plates. “How about the chicken pancakes?” No, not the chicken pancakes. “Then how about the chicken fish sticks?” No, not the chicken fish sticks. Seb’s ready to eat the chicken nuggets.
- And in yet another musical iteration of our word game, we might change a key word in a familiar song, like We Are the Champions. Except, in our song, we change the We to Seb, as in: “Seb is the champion, my friends. He’ll keep on fighting ’til the end. Seb is the champion. Seb is the champion. No time for losers ’cause Seb is the champion of the world.”
We enjoy playing together and laughing about silly things, as we play and mess around with common phrases and songs. These simple games help Seb, like any kid, listen to every word we are saying, utilize his ability to recognize the abnormality, and enjoy the interaction.
Millie sees her Big Bro-tector and smiles with adoration.
Update from the Baby Front
Baby Amelia Sophie, or Millie, as I am liking to call her, is growing bigger and bigger–gracefully, every day. She is eating, smiling and cooing. Her hair, a lightish, blondish color, is growing out now in furry, fuzzy tufts. One of her favorite activities is to lay in her crib gazing at the lion-star-swirl-pony mobile that her Grandpa got her. Millie loves to be held and, in fact, according to Elia, demands it 24-7. Although we are struggling to enjoy a complete night’s rest, all is well on the baby front.
The Meandering Sidewalk 