I Dream He Talks to Me

Below the Belt

There’s a place in the human singing voice right around the top of the middle that can sound like a bell. It’s a mixture of chest and head voice. I’ve always called it the “mid-belt”—where you can get a significant amount of air, or power, behind a note and belt it out, as they say. It vibrates in the body that makes it, and in the air that it hits.

John Henry’s father and I are both singer-songwriters, and we were on an extended tour together the summer John Henry started walking. One particular August Sunday we didn’t have a show to do, so I played with John Henry in the tour bus and half-heartedly watched 60 Minutes. When the show aired a profile of a teenage gospel choir, my interest grew. The choir was singing “Amazing Grace.” I sang along, but when I got to the “a” before the word “wretch” in the first verse, John Henry pushed his tiny hands into my chest and his face away from mine. I had held the mid-belt note for a little bit too long. His face broke, and he cried. I stopped singing. He was sixteen months old.

Music makes me cry too. I am often overwhelmed by the beauty or emotional resonance of a voice or composition. I’ve considered it one of my more annoying afflictions—that I can become a sobbing mess when I hear a certain vocal tone or a particularly beautiful conglomeration of notes.

But I had never seen that response in a toddler. And what I saw in John Henry that Sunday afternoon wasn’t a feature of his personality. It wasn’t a development. It was more as if something had gone missing.

I had seen him display little behaviors that I thought were maybe odd. He had a tendency to repeatedly turn objects over in his hands or play with one part of a toy instead of its entirety. He would rub his legs together against textured floor surfaces or in the bathtub as soon as he could sit on his own—we called it “crickets.” But I didn’t know that Sunday afternoon that I was looking at a human being who couldn’t manage the information he received in a typical fashion. I didn’t know it until I saw him burst into what I could tell were tears of emotion when I hit that note. I didn’t know it until my mind raced around wondering why he’d cried them, and then realized that he had been using his words less and less in the weeks that preceded that day, that he had shuddered when he heard the drum kit on the Friday before at sound check, and that he had stopped turning his head toward anyone who said his name. I didn’t know until then that my baby very likely had autism. Music has provided myriad revelations for me throughout my life, but this was one I didn’t welcome.

I tried everything I could think of to bring him back. Several times each day, I practiced with him the words he had learned, even more than I had before. I tried to teach him new ones and would tentatively allow a wave of relief to come over me when he would try to imitate sounds and said things such as “key” for turkey, or “bala” for banana. I dutifully logged his behaviors, any little thing he uttered that sounded like a word, and any acknowledgment of another person. I tried to convince myself that what was happening wasn’t happening, all the while confirming that it was indeed happening when I would check the lists of features of autism that I found on the internet against his progressing distance from who he had been.

I began calling doctors. Then we started down the road to an official diagnosis despite everyone, his pediatrician included, telling me that my sweet and social child couldn’t possibly have autism. “Just look at him. There’s no way he could be autistic,” she said. John Henry began speech and occupational therapy, and even his speech therapist suggested that he had a sensory processing disorder and not autism, though his words had almost completely gone away by the time we made our way to her.

He received the diagnosis the following March when he was administered the usual battery of tests that determine whether a person lands on the spectrum or not. By that time, we’d started to adjust to the reality that we’d likely be told he did. I had stopped singing in my full voice around John Henry. I would sing the baby songs—“B-I-N-G-O,” “Twinkle, Twinkle, Little Star,” and others that don’t require any velocity—and he didn’t seem to mind. But if a song or my voice held any hint of poignancy or hit that mid-belt place, it was too much for him. I was careful not to forget myself and break into song, as I had been wont to do for as long as I could remember. It was heartbreaking. I knew it wasn’t about volume or pitch. It was about his becoming overwhelmed by the way my singing made him feel. If a human face is the hardest thing in the world to look at because it is so complicated and holds so much information, then the human voice must be the hardest thing to hear and make sense of for the same reasons. It all made me turn quiet. I felt as if we had lost a way to bond on top of everything else.

I thought John Henry might shy away from music for his entire life. I couldn’t imagine what that would be like for a person, let alone one who was born into the family that he was. I didn’t know and couldn’t imagine an existence without it. I struggled with his struggle and I worried about what his father and I had passed on to him. Could it have been our faults that he was so sensitive to music? Music above all else has always given us both pathways with which to connect to the world. It has, in different ways, saved us. What we cannot say, we can sing. I thought it ironic that the son of two people whom music had blessed so richly was so plowed over by it. But as I got used to the idea that my son was very likely going to walk through this life with a different filter than most, I also started to see that he had a gift. I began to see that he didn’t have a lack of love for music at all. In fact, it was the opposite. John Henry has a great sensitivity—it’s almost as if he is missing a layer of protection against the onslaught of information the world can throw at you—but he slowly strengthened himself and continues to do so. I will always remember the day that I forgot to skip “The Cow Song” on his Classical Baby DVD (Puccini’s “O mio babbino caro”) and I found him standing in front of the television, little fists clenched, not just enthralled but also seemingly determined not to cry. He made it through the song without shedding a tear for the first time. I can’t say the same for myself when I discovered him watching it, having come around the corner just a little too late.

Now as we learn sign language together, the sign for music is one that I can almost always count on him to remember. He has no functional verbal language yet, but he sings to himself in what sounds to me like awfully good pitch. He strums his ukulele and plays the drums. He has rhythm, and its patterns seem to organize and regulate him. He likes Justin Bieber, OK Go, Hoagy Carmichael, Ravi Shankar, Adele (he simply beams when he hears her, which delights me), and Mozart. And to my great relief, he tolerates and shows signs of liking even his mama’s singing.

What he once couldn’t process at all now gets him through rough spots. If he becomes frustrated or upset, I turn to music to soothe him. If I want him to pay attention to me, I sing to him. We play records in the house and practice silly dances. What I know now that I didn’t know on that August 2011 afternoon is that because his antenna is set so high, he can feel music deeply. It moves him. I often wonder what it is that he hears as he turns his head toward a tree when the wind rustles its leaves, or when he notices a formation of birds flying overhead and he smiles. I suspect he hears music all around him because he stops what he’s doing and he listens. My son has taught me countless lessons, but the biggest one may be that there is music in everything. I don’t know what role it will ultimately play in his life, whether he will pursue it professionally or if he will just enjoy it. I only know that music might very well be his language in some way. What he cannot say, he might one day sing too.

The Feeling Foot

The left shoe is always the first to come off. Sometimes it’s the left one only. He has the routine perfected now—when he stands still, he starts to shimmy it off. Right toes on the heel of left shoe, press right toes down, lift heel of left foot, and voilà! Off it comes. He then proceeds to joyously prance and run around, his left foot seemingly taking the lead, piloting his often mysterious mission.

My son has, since he was born, appeared to prefer his feet bare, but during the past few years it’s been hard to keep shoes on him at all. His teachers prescribed Chuck Taylor All Star high-tops, and they do work to alleviate the problem of constant removal as he is unable to thwart the double-tied laces, but it is now summertime. It is hot. I know that I wouldn’t want my feet encased in thick terry cloth and canvas all day every day so I buy him sandals. I can tell it frustrates the teachers because he gets them off swiftly and they have to repeatedly help him put them back on his feet. All I can say about that is he wants his feeling foot free and I’m inclined to side with him.

I call it his “feeling foot” because that seems to be how he uses it—as one would their right index finger, as Sacajawea to the Lewis and Clark that is the rest of him. I watch and try to imagine why it goes ahead, how it steers him, and what it divines. Does it have a sensitivity that his other foot doesn’t? Does the shoe hurt it? Is there a simple answer? Maybe.

He isn’t a toe walker like some people with autism and sensory processing difficulties. Occupational therapists say that those with autism can’t necessarily feel where their bodies are in space, that they have no specific sense of what their physical selves are always doing, that the vestibular system doesn’t work properly. There lies the root of the personal space issues, the coordination problems, the lack of awareness, and the lack, or presence, of fear. Or not. It crosses my mind that my son doesn’t have those problems in abundance, if at all. I wonder if he sits exactly where he wants, if he moves precisely as his instincts tell him, and if he is perfectly aware that there’s nothing at all, in a cosmic sense, to be afraid of.

What am I afraid of? Why do I watch him so closely? I’m afraid I will miss something, and it’s my job to know everything. I watch him closely so that I might see.

I try to see. I stand back and I observe. As I do, I’m acutely aware that I am not interacting, rather studying him as if I need to take notes for a test. Indeed, this is a test of sorts, of my intelligence, my deductive reasoning power, my empathy, my sympathy, my humanity, my capacity for love. I desperately want to not just pass but earn an A. An A-plus. I want to wrangle my skills and master my subject, earn an advanced degree, become an expert in it, confidently converse about its many misunderstood nooks and under-thought-about crannies. The feeling foot is my syllabus.

The shoe comes off. The prancing, the excitement, the jumping, the running, the flapping of the hands and the bare foot onto the wood floor, the grass, or the concrete. Does the texture register through his nerves and skin? Does the wood feel smooth and warm, the grass prickly, and the concrete scratchy and hot? I think about my own left foot. My feet are outrageously ticklish and sensitive on the bottoms, yet toughened on the balls and heels from years of cruel shoes and Manhattan living—I walk, therefore I am. I walk in heels, therefore I haven’t yet given up. I rub my bare foot over the rug on the floor below where I sit. Soft, fluffy, a little warmer than the rest of the room. Would his foot feel what mine does? If it didn’t, what is our framework for commonality? Where do our ideas meet if we don’t discover we have similar experiences? How do I know him if he is unlike me? I look for common ground. He rids himself of the left shoe and twirls in the gym of his school, sits on the front porch of the house in Nashville, or splashes in a puddle. More time with no shoes on, I think.

To know is to be familiar, to have the information, the data, the raw material with which to take the next action. Parents, when we have new babies, spend most of our time trying to gather evidence about them so we’ll understand what to do and then what to do next. We want to be familiar, to understand. To be understood is to be comforted. We deduct, we reason, we work the problem, we solve the puzzle so that we can console or help, so we can be the ones who know. We wait for the talking to start and think it will tell us more. But what if the luxury of language doesn’t appear? Can we still know? Can I know my son if he doesn’t use words?

He doesn’t have to say it. He has conveyed his love of barefootedness to me without so much as an a, b, or c. I think of words—their magic, their ordinariness, their successfulness, and their utter failure. If he could talk, maybe he would say, “I much prefer to have my left foot unshod than trapped in this stifling sneaker. I want to feel the earth, the floor, and where I’m going.” But he doesn’t have to. He is more efficient than that and has figured out how to get what he wants without having to make a verbal, or any kind of, request. Would he tell me what that foot feels even if he could? Words fail. Actions communicate clearly.

I grab his foot and tickle it. He jerks it back. He playfully sticks it back out and toward my hand. I grab it and tickle it again. He laughs. Communication. We are playing. His foot is ticklish like mine. His foot is like mine. He is like me. We are related. I know his foot. Common ground. I know him.

The feeling foot flaps on the concrete front porch. Joy, exploration, serenity, smooth cool stone, or maybe, “I don’t want to go anywhere. I want to stay right here on this porch where it is cool and there’s a breeze and I can smell the grass and flowers and hear the birds.” He climbs into the swing. I sit down beside him. I am quiet and so is he. I listen. Like the feeling foot, I am suddenly bare, unguarded, and open, seeking the information that will guide me toward the answer to the next thing. Like the feeling foot, I go ahead, looking for what’s in front of us.

A Guide to Getting Through

1. Keep your perspective.

It will be helpful to you if you have already lived through some life-altering events that will have shown you how to do this autism thing more easily. Of course, having a child with autism will be nothing like any of the things you thought you wouldn’t live through before you did, but it will be monumental in your life. It will shake you to your core and you will have to figure it out daily. But look at the bright side—if you have been lucky enough to have had even one reality-shattering event upend your life before now, you will have developed a few fuck-it skills. Because of them, you will know not to ask, “Why me?” You will instead, when you figure a few things out, say, “Well, why not me? I got this.”

2. Get used to not sleeping.

There will be nights when your child won’t go to bed and stay there. There will be nights when you will wake up and he’s standing over you, staring. There will be nights when you will wake up and sense something is amiss, go to his room, and find him standing in the windowsill looking down to the courtyard four stories below. There will be nights when you’ll wake to the sound of water running. There will be nights when you will have the what-ifs so bad that it will be you who won’t be able to keep your eyes closed. Then there will be nights when he just wants to crawl in bed and cuddle with you. Those will keep you awake too, either because you’ll be happily staring at him or because you’ll be clinging to the edge of the mattress since you don’t want to wake him and he’s taking up the entire bed.

3. Grow elephant-sized balls.

And flip the bird, either literally or just in your imagination, to everyone who gives you shocked looks when your child disrobes in public. The same goes for when he joyously jumps into a large decorative fountain, swipes food off of a complete stranger’s plate in a restaurant, darts around like a hyena in a movie theater maniacally laughing and throwing popcorn, jerks clothing off of a hanger at a store and whips it around like an adrenaline-crazed matador in front of a bull, screams at the top of his lungs while on an airplane for seemingly no reason (there’s always a reason, by the way, you just won’t always know what it is), or generally wreaks unimaginable havoc in a public place. Sometimes people need to get over it and see that you have your hands too full to stop and explain everything all the time.

4. Be okay with being lonely.

You might sometimes feel isolated from those in your life who don’t quite understand your challenges, and even from those who do. Sometimes what’s going on will be impossible to explain. Sometimes you’ll just be too tired to try. You might start talking to yourself, thinking there’s nothing weird about doing so. After all, it’s strange to live with another person who doesn’t ever answer your questions and hardly ever utters a word at all. You will still have friends, but you will often be too tired to accept their invitations, or they, like you (because birds of a feather), will have a child they can’t leave for long either. Try to remember yourself and take a breather when you are allowed. Have a real conversation about something other than autism, or have a cup of coffee with someone who does get it and discuss it at length.

5. Don’t shrink.

You’re going to have to expand. You’re going to have to stand up for your child to the fullest degree. There will be no “working it out on the playground” if another kid bullies yours. You will surprise yourself and want to throttle the little devil who dares to make fun of your baby’s arm flapping or distinctive vocal sounds. This instinct applies to more organized situations and institutions as well. When the speech and language department tells you that your non-speaking child is going to have his fifth new speech therapist in less than four years, you’re going to have to meet with the Head of School and say it’s not acceptable. When you have to take “I know” for an answer, you will walk, fuming, out of the building and consider impaling yourself on the pointy end of one of the pickets of the wrought-iron fence surrounding the park that he can’t play in even though it’s next to his school. You’re going to have to remember that thankfulness and a bottomless well of gratitude is not always the answer. You will have to demand what you know your child needs, even to the supposed experts.

6. Nod and smile.

“Is he talking yet?”

“So, is he really good at music?”

“I’ll bet he’s a math whiz.”

“Oh, I can tell he’s so smart.”

7. Be okay with wasting money.

You will buy every book on autism. You will visit doctors whom friends have told you helped their child. You will try special diet after special diet thinking there might be something to the leaky gut theory. You will pay more at the grocery store than you ever thought possible save for when you shopped for Thanksgiving dinner in 2008 and you were feeding twelve people. You will go to the health-food store and buy magnesium, B12, B6, L-glutamine, turmeric, etcetera, etcetera, and every soothing essential oil and natural remedy until your cabinets smell like an old hippie’s. You will try anything that holds a promise. You won’t care how much it costs. You will eventually learn that none of it really makes that much difference, not that much more or even as much as it would in a so-called neurotypical person, except for the essential oils and aromatherapy. At least they make you and your house smell nice.

8. Learn how to swim through snake oil.

You will nod and smile (see number 6) when some well-meaning person tells you about an article they read or a video they saw about how someone cured their child of autism. You will already know about it because you will have started to do a Google search on the latest news and developments in the land of ASD every morning while you sip your first cup of coffee. You will be curious about the reports that might hold some real promise, but you will know that those are, sadly, few and far between.

9. Practice selective deafness.

You might, from time to time, overhear someone whisper, “What is wrong with that child?” You might, early on, try to tell them that there’s nothing wrong, he only has autism. Chances are you’ll quickly develop a sort of shield for your ears and will begin to slightly block out the ugly utterances, murmurings, hisses, and sighs. If you don’t, you will at least tell yourself that the remarks don’t matter even as your heart breaks. You will tell yourself your child can’t hear them too. You will probably be wrong.

10. Get help if you need it.

I didn’t think I would need any at first. I thought I’d be able to power my way through this like everything else in my life (see number 1). But this isn’t everything else. The panic attacks and sleeplessness started for me even before he was diagnosed. The feeling of dread about what was around the next corner that I carried already suddenly deepened with the realization that the unthinkable was not only thinkable but our actual reality. I’d wake up just to watch him breathe. Sometimes, I still do. The post-traumatic stress disorder I’ve tussled with my entire life kicked back in after he was diagnosed, full throttle. I had dreams about earthquakes, about being stuck underground, and that was when I slept deeply enough to dream at all. I got a therapist and try not to think about taking a nerve pill here and there being a possible cause of dementia because I will not be taking them for very much longer, as soon as he gets better, as soon as he starts to talk, as soon as I’m not working so hard, as soon as…

11. Lose all fear of embarrassment.