When she was younger, Allison Moorer used to believe that she wanted an intellectual existence, a life of the mind. But now, at 42, she sighs, “What I’ve realized that I have is a life of the hands—I’m always just making something, or I’m writing or drawing something, because it makes me feel connected; it makes me feel real. It’s the same way with music—I just want to make it.” Hence, her latest ambitious set, Down To Believing, which documents her recent split from her husband, Steve Earle, and even the motherly guilt she felt when their son John Henry, now four, was diagnosed with autism two years ago. Moorer will be guest editing magnetmagazine.com all week. Read our brand new feature on her.
Moorer: I knew when John Henry was about 17 months old that something had happened to him, that something was wrong. His Daddy and I had him on the road with us, so we spent most of our time in a tour bus, traveling all over North America. We were in Canada one Sunday afternoon in the late summer of 2011 with a rare day off, and John Henry and I were hanging out in the bus. I was watching 60 Minutes on television and there was a piece on about a teenaged choir from Harlem. They let loose on “Amazing Grace,” and I let loose with them, as one does. I was holding John Henry. When I got to “that saved a wretch like me,” he pushed away from me with his little hands and cried the most pitiful, emotional cry. This was not physical pain, this was a reaction to, I think, what he thought was my pain. It was too much for him to process. He was overloaded. I stopped singing and held him close.
His use of words had also begun to dwindle. The following day I said to Emily, his Nanny, that “he wasn’t using his words as much, was he?” She replied, “No, he’s not,” and gave me a look of concern before she quickly turned hey eyes away from me.
I took him outside to a park and tried to get him to point to different objects. He wasn’t really interested. I was in a panic. I took him inside to the dressing room and gave him some roasted turkey to eat. I then taught him how to say the word. He called it “key.” My panic was relieved for at least that day. He had learned and begun to use a new word, so everything must be all right, right?
But he wasn’t the same as he had been. He didn’t make eye contact a lot of the time, and this was a child who had smiled and waved in his first photograph with Santa Claus just over a half-year before. He had never met a stranger. But now he didn’t care about playing with his toys other than to manipulate them in a very non-traditional way and put them in a pile behind him when he was sitting on the floor. He was withdrawing. I felt like we were losing him. I called everyone I knew that might have some advice.
His pediatrician told me not to worry. That often when boys, especially boys, are progressing so fast physically that they put communication on the back burner. So I waited, meanwhile checking and re-checking the warning sings for the dreaded A-word every day. I said to Steve one morning at the kitchen table that I thought John Henry might be autistic. It was a hard word to let come out of my mouth. But I knew I had to let it loose, I had to say it in order to accept it in order to do for my child what he needed.
There were more tour dates on the calendar. We were going to Europe for six weeks. John Henry never withdrew physically; he never resisted hugs or cuddling, and was in fact very connected in that way, which gave me hope. But he was only sporadically saying his favorite words when I’d hold up a flashcard of an object by that time when he’d been consistently doing it before. He continued to say “Mama,” but only every now and then and it seemed like almost an involuntary response, like a reflex.
When we returned from the last of that year’s tour we found a speech therapist and also an occupational one. They both saw him at least once a week.
John Henry was formally diagnosed in March of 2012 just weeks before his second birthday. He was completely non-verbal by then, except for the odd pop out of a word here and there which no one could predict or figure out what the cause of was.
We immediately began doing all the things we were supposed to do that we had not already started. A special school, sessions at home after school, and everything else we could think of.
No one knows what causes autism. There are the so-called experts and certainly the snake-oil salesmen that will tell you that they know, but if they knew, we’d be closer to a cure.
We’ve tried special diets, we’ve tried supplements, we’ve tried detoxification, all resulting in little to no results and ultimately creating an atmosphere of stress and strict regimented-ness for John Henry. What works the best that I can tell, and even it is a constant roller coaster, is attention, engagement and connecting, in whatever way is possible, with him. And keeping a very, very close eye on the ball.
John Henry is still very much all there in a very real way. He is not disconnected, as some say people with autism are. He becomes more himself, with an extremely funny personality, I might add, every day. He is a bright, sweet and beautiful boy. And no matter what got tangled up inside him, he will be loved every minute, and shepherded through this world to the best of his Daddy’s abilities and mine. He’s also got a whole slew of other angels looking out for him, to which I am forever grateful.
I don’t know how things will turn out. But in the meantime, I will try my best to embrace what is different about him, despite the fact that he can’t tell me with words when and how he hurts, when something is wrong or even what he would like to eat. I’ll keep guessing. That’s my job.
And just so you know, he loves it when I sing to him now.