It’s 6:44 a.m., Sunday morning. I’ve been up since shortly before 3 a.m. Happy Three-Day Weekend, right?
It started with a child who asked me a question.
“What’s that sound?” he asked.
“I don’t hear anything,” I responded, but I was hyper-alert. This kid usually sleeps through the night. That he was up and asking me a question was troublesome.
“That grumbling sound,” he clarified.
“It must be your tummy, “ I responded. And it was.
This is the first time he’s thrown up since he was 2.5 years old and had a reaction to his prednisone. Like his mom, this kid rarely barfs. He had it bad, if you know what I mean. But this time around, it was different.
He was able to tell me what was wrong in his own way, the “grumbling sound”. He barfed into a plastic garbage bag for the most part. I only had to change the sheets once.
Instead of crying, my child is different. He repeats phrases to soothe himself. We spent a lot of time in the bathroom. There, he repeatedly screamed “Car wash!” to tell me he wanted to be cleaned off, and as a way to “let off steam” with the intensity of the bouts of illness. And, I’m quite sure, my son is the only child who recites the U.S. Presidents when I wipe his raw rear end for the 100th time, in ascending volume with the crescendo coming at “MADISON!”. Poor James. If only he knew his name was said in vain, multiple times around our house.
In the moments we made it back to bed, he was trying to calm himself from all that queasiness. He reverted to a behavior which was our daily routine before ABA, before a diagnosis, in the middle of meltdown after meltdown.
He asked me to draw.
It’s his way of soothing himself but he requires my cooperation to do it. He will ask me to draw picture after picture. He hates to draw himself (and can barely do it) but there is something about looking at a drawing, or watching me draw, that is calming and soothing to him. Maybe it’s the control, you know: the prince has commissioned a work of art. Maybe, it’s just a distraction that works for him.
The objects of the drawing are often the same. Apples, cars, trucks and octopi are his standard subjects. Early this morning, it was an octopus. I used to fight these drawings. I’m no artist and I hated to draw under pressure while he was screaming, crying and generally, melting down. But I knew, in this early morning, it was something that could make him feel better. So, I pulled out the sketchbook, I have tucked away in a cupboard for just this purpose, and did my ‘job’.
As I was completing the drawing, he shot a barrage of questions about colors at me, another standard subject from back in the day of regularly scheduled meltdowns. “What color is the octopus?” “Draw a blue one! Draw a red one!” His mantra then morphed into demanding I draw red and blue monster trucks. I remembered a tool I’d found online to calm him during the old days, when he would do this and I found it again on YouTube. It’s a soothing voice reciting colors with pictures.
Within seconds, he was calmed. He replayed the video several times. The difference this time round was that, instead of just watching, he described the balls, the planes and the cars in detail and created stories around them. “The planes are going to Hawaii.” He used language.
Though he has a very nasty bout of stomach flu, with it came realization about growth within my son’s own autism diagnosis. He’s so different now than he was three years ago, when he was half this age.
When he was three and a half, (3 years ago) we were struggling in a long line to get a diagnosis from UC Davis MIND Institute. We didn’t know he had autism. I had just made the first phone calls to what’s known as “regional centers” here in California for those with developmental and intellectual disabilities and were waiting for an appointment. My son was struggling to communicate, to process, and to regulate himself.
Now, he is able to tell me his stomach is sick. He is able to soothe himself quickly. He is able to write, to ask for things, to make it to the bathroom on his own, to attend school with neurotypical students in the first grade. He’s competing in the inter-school spelling bee finals, out of town, at the end of the month. He plays drums, takes swim lessons, and he’s taken a vacation 2100 miles from home. Best of all, he tells me he loves me, on rare occasion, all by himself.
All of that brings me tears of joy, relief and hope for the future. Growth is an amazing thing and it is happening here, with this diagnosis, in this house every day. It took the jolt of a tummy bug to remind me how far we’ve come.
If I could go back in time, and talk to myself, three years ago when I was first discovering this diagnosis, I’d tell myself that my son will need lots of therapy and hours and hours of patient work, but he will grow far beyond where he was.
I would tell myself how that little guy will use a lot more language. He will be quirky but he will be even smarter, more beautiful and loving and he will reach a lot of independence by the time he is six. I would tell myself that you will worry and you will struggle to find him all the best therapies and best education. You will use that worry to find the right people and the right places. It may not seem like you’re getting there sometimes, but you will.
And growth or not, I would never have to tell myself what I have known since the day he was born. I will wipe that nose and rear end until the end of time if I must, because that’s just what you do for love.