You never know when the urge will get the best of him. In the middle of his preschool classroom, in the waiting room at therapy or outside in the dirt. When the mood strikes him, he drops to the ground and doesn't hold back.
It's yoga, and for Johnny, 4, it's a coping device. When he feels nervous or doesn't know how to express himself or handle a situation, he goes into a pose. Don't get me wrong, Johnny really likes yoga, but kids on the autism spectrum tend to have a physical tendency when uncertainty takes over.
I've learned to accept his usually awkwardly timed downward dog. It's Johnny being Johnny. And like many of his quirks, it has taught me to be more patient. It's one of many lessons Johnny has taught me over the last 18 months, when he was diagnosed.
He goes by "Buddy," but officially he's John Elliott, or Johnny. He earned the nickname when he was born because he looked like Buddy Hackett. It turns out he could've earned the comedian's name for his sense of timing and ability to make people laugh. He can be a handful, and a ham, both within a moment's notice.
He loves to sing, loves Lightning McQueen and like most kids loves pizza. But he also has no patience at times, can't express what he's thinking or feeling, and throws a tantrum when events don't follow a schedule or a pattern he's familiar with. Routines are his friend. When his daily schedule is changed or interrupted, all hell can break loose. That's why his therapists gave us a picture chart of daily events that we hang on his bedroom door. It helps him adjust to changes in activities and keep his composure.
The importance of a schedule is the first thing I learned about coping with the disorder. It is reinforced throughout the day, every day.
My wife, Christina, and I are fortunate and remind ourselves often how lucky we are. Johnny has been placed on the end of the spectrum that most parents hope for, where speech and occupational therapy should get him caught up to his classmates within a few years. There are many kids who have a much longer road to travel, and visits to the pediatric center remind us of that.
But from all the training we've received and therapy sessions I've attended, the most important tool to help him has been an endless supply of patience. We need it to cope with the challenges it creates for everyone around him. We need it when he doesn't understand what we're trying to teach him and he recoils and resists and loses interest. We need it when too many people are talking to him and he goes into sensory overload and melts down. We need it when his appointments make us late for work.
We need it when he has a screaming fit at Denny's for no apparent reason that turns heads three booths over.
The ironic part is that patience is the last thing we needed when we were trying to figure out what was wrong with Johnny after his second birthday.
At first it was hard to recognize, with his big sister, Eva, always nearby and talking up a storm. But then he began to not respond to us as much and rely on pointing. He didn't show much imagination or even try to express himself. He just kind of went with the flow.
We thought it was his hearing. He had a series of ear infections that led to surgery to have tubes inserted in his ears and his adenoids removed. His hearing improved, but his speech was even more delayed, and he fell behind on the developmental road map you become fixated on as a parent. His initial doctor said not to rush to judgment, to be (gulp) patient, and reminded us that boys develop slower than girls, especially those with a bossy sibling. And that doctors are too quick to label kids as autistic.
But something wasn't right, and we knew it.
Up until last fall, Johnny couldn't say what he wanted or felt. Hot? Cold? Hungry? Who knew? He didn't answer questions and would cry or yell or whine when you couldn't decode his gestures. He still does. Since the journey began, we did research, called hospitals, called insurance companies, talked with other parents, had evaluations performed and visited doctors, therapists, specialists, an audiologist, even an allergist.
It took going against the advice of our pediatrician to reach his eventual diagnosis.
It was a clumsy, frustrating game of Clue that required anything but patience. It took being a pest, a big one, for eight months, and the tireless work of his mother just to get his first autism screening. She displayed the tenacity of her Marine Corps father to get to the bottom of what was slowing Johnny's development, navigate the insurance bureaucracy to cover his treatments, and find the right staff and therapy — which now has Johnny performing yoga poses in inconvenient places.
In many ways, his diagnosis with high-functioning autism has shaped my daily routine as much as his. I have to remember to slow down and ensure eye contact when talking to Johnny or asking him questions. I have to encourage him to "use your words" tirelessly, as he tends to respond by repeating your words or give yes or no answers. I have to keep to the schedule that's Velcro'd to his door, and plan for more time than I think is needed to do anything with him. That might be the toughest of all.
I no longer keep the developmental milestone chart bookmarked on my computer. Johnny has his own timetable and learning curve.
It can be exhausting holding back and trying to not do or ask too much, but the payoff is worth it. It's the smile on his face when he asks for something he wants, on his own, without prompting, without gesturing or pointing, and without a tantrum because he couldn't get the words out.
One of the traps I've found myself falling into is looking ahead to a finish line, when therapy appointments are a thing of the past and Johnny is as chatty as his sister. Progress one day doesn't mean that he's almost in the clear, or that you can lift your foot off the gas pedal as far as working with him. It means to keep expectations in check, keep working and stay patient.
In June, Buddy finished his first year of blended preschool (consisting of students with and without disabilities) at Courtenay Elementary Language Arts Center on the North Side. He spends time each week with a speech and occupational therapist there, along with twice-weekly visits to Advocate Illinois Masonic Medical Center's Pediatric Development Center. He has one more year before kindergarten and is on track to follow in the footsteps of his sister to a regular class setting. He's using language more ("May I have a purple cup?"), speaking in a few four-word clusters and waiting his turn more and is a whiz at numbers, letters and song lyrics.
As Johnny learns, so do I.
First and foremost, Johnny is the 1 in 88 children in America with autism. It's OK. It's just a hurdle.
But I've also learned that there's a time to be patient and a time to be impatient. If you think your child is showing signs of delayed development, I tell people, check it out. If services are available, be persistent and take advantage of them. Don't have time? Tough, do it anyway.
I've learned to keep cool when my child doesn't understand or gets confused. To slow down and work with him. I've learned to become the most patient version of myself that I can imagine.
It's a blessing that autism doesn't define Johnny, but it surely has shaped him and taught everyone around him the importance of patience. And a few yoga poses as well.