November 25, 2013
His hands reach up forcefully to free his scalp from its gauzy restraints, and for the hundredth time I say “No Justin, it has to stay.” Although my son responds with obvious distress and a few more furtive attempts at freedom, he complies. My mom and I run around trying desperately to distract him, and achieve mecca when the hospital’s child life specialist brings a cache of “light up and spin” toys, his favorites from home being so yesterday. We are in our fourth hour of “EEG captivity,” and the adults in the room are all wondering how we’ll get him to bedtime, much less through the night where most of the important information will occur.
Finally our dinner arrives, and as if by magic my happy boy returns, his desire to pull off his cumbersome headgear quelled. I look at my mom and smile in relief, as since we’ve made the supreme effort to get here by God I want to compile this data. Eventually Justin turns off the television himself and hands me his favorite book, and with astonishment we realize the child who has only spent two nights outside of his own room in the last seven years is actually ready for bed. We quickly comply with his demands, darkening the room as he likes, turning on his sound sleep for white noise and comfort.
I curl up next to him on the bed and rub his back as I sing his night songs, see his breathing even out, watch him as he slips into slumber. My mom and I quickly clean up and organize the space for my husband’s impending shift, and we quietly high-five each other, as not only is Justin unconscious which is imperative for the study, but we’ve managed to capture the episodes that indicate potential seizure activity.
Since epilepsy is often co-morbid with autism his neuro pediatrician thought we should do the test, and although we don’t like to subject Justin to unnecessary procedures, this one seemed important. My shoe catches on his errant sneaker and I almost take a tumble in the dark, and I contort my body to avoid making noise because I will do anything legal to keep this boy asleep.
I sit to avoid further calamity, and wish once again the hospital served wine.
As we wait for my husband to arrive I have a few minutes to reflect on our experience, which despite great difficulty has been a positive one. My son, who generally wants to leave even the most fabulous places in under an hour and loves his bedtime routine perhaps as much as his parents, has made it through the better part of a day with tiny electrodes placed all over his head, held in place by a gauzy substance that is certainly irritating the hell out of him. He has born these indignities with some protest, but each and every time I’ve told him “No,” both in response to removing the offending head gear or his plea to leave as he shoves his shoes in my hands, he has complied with my refusals.
As I sit back in the hospital’s surprisingly comfy recliner I reflect upon how momentous today has been, how I could not have entertained even attempting this procedure even a year ago, how much Justin has matured, and with such grace. I think upon the different trajectory of my sons’ lives, how my youngest with mild autism will most likely follow a more traditional path, perhaps involving a spouse and children, most certainly a stint at college and career.
I muse that I will be proud of his collective accomplishments, the trappings of a “normal life” that will probably be his due. I gaze upon the slowly rising blanket of my slumbering son and feel to the depths of my soul that I am equally proud of this child as well, my son who tolerated the hands of strangers today, the confines of a hospital room, the indignities of electrodes monitoring the mysteries of his brain.
I contemplate the fact that every time I denied him his protest was coupled with a deep gaze into my eyes, a slumping of shoulders that admitted defeat, but an absence of aggression. I ponder how much self-control this action necessitated, how he contained his wrath, how he constantly shatters my expectations of him.
I walk over to adjust an errant swatch of his favorite blanket, feel his moist breath on my fingers, gently lean over to kiss the cloth so as not to disturb him. Tomorrow he will most likely return to his beloved home, this child who despite his severe autism has days dominated by affection, who at ten years of age is attempting to speak to get his needs met.
His accomplishments differ greatly from his sibling’s, but they are equal in stature, merit commensurate praise. I watch as he shifts slightly, perhaps chasing dreams of home, and my heart swells with pride, with love, with gratitude that he has helped us conquer yet one more hurdle in his often challenging life.
Soon my spouse will enter, and the changing of the guard will occur. But for these few moments I simply hold my mother’s hand, revel in the beauty of the boy before us, and let my unfettered pride reign.