10:15pm. It’s Friday night, and I have dozed off in a hallway of the Psychology Department at NYU, sitting in a chair across from a sign that says “Sleep Study in Progress – Please Be Quiet!” Behind the sign there is a little room where several Thomas the Tank Engine sheets and pillows mask its position as the waiting room in a research lab. I had just emailed a friend of mine to say that if all goes well, we’ll be finished by midnight.
In the Thomas the Tank Engine room, Dimitra is currently trying to get our son Yanni to sleep. We had just read the ironic news via text message that Yanni’s identical twin brother was sound asleep back at home. Vasili has already been in the Thomas the Tank Engine sleep room twice, and twice he failed to sleep deeply enough for the task that lies ahead for Yanni. That task is to put on earplugs, headphones, various other monitoring wires, turn on his back, and be perfectly still (ideally sound asleep) for up to 45 minutes while inside a noisy MRI machine.
Unlike many autistic children, Yanni and Vasili tend to be good sleepers. What makes me nervous about their ability to sleep in the machine is not the noise or the wires or the strange environment, but the need to lie on their backs. I’m not sure they can do this for five minutes without straining to roll over. I know this because for the past three weeks, we have been training Yanni for the big night. Every night after he goes to sleep, we have played an hour-long CD featuring the loud bleeps and grinding noises of the MRI. We have been making him increasingly uncomfortable for the experience, first with little putty earplugs, then with a cap, and finally with headphones. Yanni usually sleeps through the cacophony, but he almost always winds up on his stomach.
We have signed both of our sons into a study called “Functional Brain Imaging of Low Frequency Oscillations: Relation to Attention and Sensory Integration.” By comparing the brains of autistic children and the brains of neurotypical children, the researchers hope to understand more about the disability. We are excited to be part of this, not just because we are helping to contribute to knowledge, but because we get a thorough evaluation of the boys (not normally covered by insurance), which can be useful when negotiating with school boards.
Our bodies have different ways of marking the passage of time. Breathing and the heartbeat are the most familiar, but there are other ways too. There is also a rhythm to the activity in our brains, which fluctuates on a cycle of between 15 and 30 seconds in duration. I have always found it easier to concentrate while listening to music, and I wonder if music helps regulate this natural neurological rhythm. Our sons, like many autistic children, have difficulty staying focused on non-repetitive activities, and they are highly motivated by music. Sometimes, when they cry from distress, we can put them at ease simply by turning on the radio. The researchers hope to find out if this cycle looks different in the brains of autistic children and children with attention deficit hyperactivity disorder (ADHD). I note that it’s going to be a long night, and I’m helping to pass the time by thinking of a song I recently downloaded.
10:30pm. Dimitra peeks out the door and wakes me up to tell me that Yanni seems to be deeply asleep. We agree that the best way to test this is to call the research scientists in so that they can insert his earplugs. After the first earplug goes in, Yanni rolls over on his own, paving the way for the second earplug. He seems to be pretty out of it. We’re going to make the attempt!
Before we move Yanni, we have to take him out of his sleep-sack. Many babies sleep in these, which are essentially blankets that fit over a child’s shoulders with a zip down the middle. The zipper is metallic, and no metal is allowed in the MRI room. (Earlier, Dimitra and I had to answer a long list of low-probability questions, like whether we have worked as welders or had eye injuries involving metal.) We found a Canadian company that makes sleep-sacks for older children, since there is no way Yanni and Vasili would be able to stay under normal sheets and blankets overnight. The three of us then had to undergo a metal detector wand-examination, like the one you get after you set off the main metal detector in the airport. We passed.
We transfer Yanni to a bed-on-wheels and bring him through what I will call the control room, which overlooks the MRI room, and onward to the MRI itself. Four NYU scientists then grab the sheet under Yanni, count to three, and hoist him onto the table.
At this point, Yanni opens his eyes briefly, but still seems to be asleep. We wait two minutes, five minutes. Then the scientists start fussing around and prepare him for the scan.
11:07pm. It feels like it’s been forever since we brought Yanni into the scanning room. I’m worried that it’s taking too long, that he’s already been on his back too long, that there’s no way he will stay asleep in the scanner. Finally it’s time to try. I feel relief and excitement. After two failures with Vasili, maybe we will actually be out by midnight. Dimitra goes into the control room, and they start to slide Yanni into the scanner. Then, he opens his eyes again. We wait again. The eyes close. Then he stretches. Finally, Yanni starts grabbing at the kind of cage that surrounds his head. There’s no kidding ourselves. He’s awake.
I run to him as the researchers free him from all the wires and headphones. Yanni reaches to me and starts giggling. We go back into the Thomas the Tank Engine room and start again. This time, I bring the chair into the room and fall asleep on it there.
1:30am. We’re back in the MRI room. Yanni is asleep. This time, it’s going faster and smoother. He stays asleep as he goes into the scan. Dimitra and I move to the control room. Anyone who is a parent has the experience of wishing their kids asleep, worried about every little sign that the child might wake up. We experience the hi-tech version of this. A small camera in the MRI machine zooms in on a mirror on the head-cage that surrounds Yanni, reflecting an image of his eye.
Dimitra and I are looking at an extreme close-up of Yanni’s eye. Sure enough, it opens. Yanni doesn’t even look around. He’s probably still asleep. We watch as he slowly blinks until the eye closes again. Collective sigh of relief. Then it opens again, then it closes. We wait. Ok, it’s a go!
The MRI starts up, and Yanni is startled. Will he be able to go back to sleep this time? Our question is quickly answered by a loud and disconcerting alarm. After a microsecond of distress, I realize that this alarm simply means that Yanni is awake and the scan is aborted. I run in again and the researchers remove the head-cage that Yanni is now grasping for.
Yanni mutters something that the lead scientist strains to interpret. Did he say, “I don’t want it!” she asks me. No, I say. Yanni doesn’t have words. In point of fact, he sometimes does say words. Every
few days, he will whisper “cup” if he wants something to drink. He says “Daddy” but only when a therapist shows him pictures of me, not in reference to the actual me. The only time he strings two words together is when he presses his chin against Dimitra’s or my check, or nuzzles us behind the ear, and says “oooh, I love!” It’s incredibly endearing. But even then, I don’t think he knows that this is two words. There is no way he just said, “I don’t want it!” But it is clear he wants out.
We go back to the Thomas room. I abandon the metal chair and decide to sleep at the end of the couch where Dimitra is trying for the third time to get Yanni to sleep. Then something unexpected happens. I hear a door opening. But the front door is locked, and the scientists only come in from the control room after knocking. Someone has a key to the front door.
The door opens just a crack, and my first thought is that it’s an evil henchman from a Bond movie. I see a very tall man with wild, stringy hair, and a pockmarked, unsmiling face. He’s trying to make us out in the darkness. It occurs to me that my wallet, mobile phone, wedding ring, and whatever other valuables are between this figure and us. The door quickly closes, and this will remain a mystery for a little while. What if he opened the door when we weren’t there?
3:43am. This time the scientists knock and come in. They ask whether we are ready yet. As a matter of fact, we are. Dimitra tells them that Yanni is still wearing his earplugs from the last attempt. But when we check, we notice that there is some putty entangled on Yanni’s hair. We try to pull it off, but it won’t move. There’s a real danger we’re going to wake him up over this, so we leave it there. Then we realize that he is already wearing two earplugs, which means that we didn’t notice that this spare one was on his hair the last time. So, we leave it there again. This time, I carry Yanni straight to the scanner, forgetting the bed-on-wheels. Within about a minute, he’s in, and the scan begins. One of the scientists mutters under her breath that this is the way it’s supposed to work.
We’re all in the control room except for the lead scientist, who has her own set of headphones and is with Yanni in case he wakes up. We zoom in on his eye, and this time it’s not moving. For there to be enough data, Yannni needs to be in the scanner for at least eight minutes. One of the scientists signals (through the glass window) as each minute ticks by. Dimitra remains pessimistic. But Yanni blows through eight minutes.
It occurs to me that Yanni is like an explorer. We prepare him, suit him up and send him down a narrow corridor for exploration. Only he can do this. But what he’s exploring is not some cave but the inside of his own head. On a monitor, we can see his entire brain structure. It reminds me of the ultrasounds we saw when he was in the womb. We even get a few printouts for our records or just as keepsakes. Unlike regular explorers, Yanni has no awareness of what he’s doing. He’ll never know that we were looking into the architecture of his brain or that he is contributing to our understanding of what makes autistic people different. For that matter, Yanni doesn’t even know what autism is. He’s just a happy little 6-year-old who is not getting a normal night sleep at the moment.
Yanni stays in the machine for a full 45 minutes. They get every kind of scan they want. By a margin of five minutes we break the record for the latest night the researchers have had to endure in this project. Most kids finish by 1am or so, 3am at the latest. Somehow, we feel we are always the exception!
When it’s over, Yanni is still asleep. He could have done more, if there were anything more to scan. We get him dressed, finally get the three earplugs off of him and start to head home. On the way out, I see that our evil henchman is in fact the security guard. He probably just wondered if we were still there. We get in the car and make the hour drive to our home in the suburbs. On the way, I feel a kind of closure by playing the song that has been echoing in my head all night, and it makes the drive easier. At last, we are home and I get some satisfaction in getting into bed just before 6am, as if that represents some kind of milestone. I set the alarm for 8:15am and go to sleep.