“HAPPY . . . BIRTHDAY . . . to . . . you.” Three days later I could still hear the refrain trailing out in my memory, fading with the remnant giggles in the classroom as I waited with my son for the doctor to read the MRI scans he’d just taken. “Routine status check of brain cyst at one year of age,” had been the doctor’s order.
The eminent neurosurgeon walked into the room, holding the scans. “The cyst is growing again,” he said without preamble. “Looks like we’re going to have to put a shunt in it.”
I stared at him, mute, my vision beginning to blur, my head spinning. Growing again? A shunt? All I could hear was my son’s birthday song, his laughter. I was back at the party, not here.
“It’s a very easy operation, Mrs. Lewis, and it’s the only way to assure that the cyst won’t scar over again and begin to reinflate.”
The doctor looked distorted; his words were senseless. He kept talking at me, but I wasn’t there. Let’s twist that candle one more time, Rex! Ah, the giggles.
“A shunt is a drain, which will allow the cerebral fluid to circulate normally.”
He wouldn’t stop talking! Why wouldn’t he stop talking? Operation? Drain? Not another invasion into my baby! Did he realize I hadn’t said anything? I wanted to scoop Rex up in my arms and run.
“Believe me, it’s the best way to safeguard against hydrocephalus,” he added.
The word was a jolt to my own brain, and it broke my silence. “Hydrocephalus?” I mumbled feebly.
He nodded, his eyes dead serious. A look of terror must have crossed my face as reality struck full force. The party was over. Cake and streamers had no place here, and “Happy Birthday” just mocked us now. I turned to look at my little boy, who would soon have a shunt in his brain! There was no choice, because I knew what hydrocephalus meant. It meant water on the brain—swelling. And that caused—I bit my lip—brain damage.
CHAPTER THREE
A World Upside Down
When the world says, “Give up,”
Hope whispers, “Try it one more time.”
—Author Unknown
Rex didn’t have much appetite again today,” his Mommy and Me teacher said as I walked into the classroom from my parent support group. She was sitting next to Rex trying to spoon-feed him. He was sitting in his high chair, tapping his fingers on the tray, ignoring his teacher and a bowl of puréed peaches in front of him. His teacher set the spoon back into the bowl. “The only thing he would eat was graham cracker bits.”
“Seems like all he wants to eat is finger foods these days,” I said. “Graham crackers for lunch and dinner, and Cheerios for breakfast.” His teacher looked concerned, so I added, “But, it’s only been three weeks since the surgery. Maybe we just need to be patient. At the rate he grew last year, he’s gotta get his appetite back soon.” I smiled a smile of confidence I didn’t quite feel. There was something different about my son. Of course, he was weak from his latest operation and was probably adjusting to having a permanent foreign object in his body. (That’s what the shunt was, even if it was helping drain his brain.)
“I’m sure we’ll see him get his old energy and appetite back soon,” said the teacher, who was as aware as I was of how apathetic and lethargic Rex was these days.
THE FIRST real clues that something was seriously amiss came about six weeks after Rex’s first birthday. He had become a picky eater, that was true, but I knew that children could be like that. They went through food phases. What made me really take note were his hands. There was definitely something different about Rex’s hands. I could never forget the perfection of his tiny new-born fingers. They were still the beautiful, exquisitely formed hands he’d had at birth, but he now seemed really hesitant to use them as he’d done before to explore his world. He would still feed himself bits of dried food with his fingers and hold his cup of milk to drink, but that was about it. When offered an object or toy, he would now pull his hands back, squeezing his fingers into a ball. You’d have to peel his hands open as well as use a lot of coaxing to get him to take the toy. In addition, he seemed unable to hold on to things anymore—even if he grasped an object, he’d then drop it almost immediately. That really unsettled me, since it was his hands that had to replace his eyes!
“It’s called tactile defensiveness,” explained the occupational therapist at the Blind Children’s Center. “Many blind children have overly sensitive hands. That’s why we have the kids explore things like whipped cream and spaghetti. To desensitize them.” She spoke to me about sensory integration, which is a therapeutic approach to combat this abnormal sensitivity. “We could start him on an intensive program immediately.” Her reassurance only helped calm my concerns for a short period.
In addition, Rex was becoming increasingly irritable. At first, the main cause seemed to be his hands and the things they came in contact with. But now, I also struggled to get his socks and shoes on. If I couldn’t get the socks on in one fast, unbroken motion, it would inevitably set him off screaming, as though in pain. He also seemed not to enjoy standing anymore and had begun suddenly collapsing his legs. They could go from taut to limp at any moment. The sensory integration specialist we’d begun seeing said it was probably due to increased sensitivity in his feet as well as his hands.
Then there was all the extraneous body movement Rex had begun to develop. He had always had a few “blindisms,” as they called them at the Center, which are the repetitive body movements many blind people have to varying degrees. Due to the absence of vision, the blind seek stimulation in other parts of the body by rocking back and forth or tapping their feet or hands repeatedly. I had learned that these gestures and movements normally lessen as the child develops and his brain matures. But now the opposite appeared to be occurring. Like a cancer, these blindisms were spreading to new areas of my son’s body previously not involved. They were beginning to include rapid hand flapping and chin tapping, side-to-side head shaking as though he was watching a tennis match at warp speed, and bicycling his legs when he was sitting or lying on his back.
“Give him time,” William told me one evening, when I was obsessing about everything that seemed to be going wrong with our son. “He’ll get his old character back.” I wanted to believe that was true but was having a hard time being patient. I wanted it all to go away now.
The next morning, William left for work as I was trying to get something more than dried Cheerios into Rex’s stomach before heading off to the Center. In a hurry to get away from what had become a morning feeding war, my husband closed the front door a little too forcefully. Rex jumped and screamed at the sound. That was the first time I noticed a new sensitivity—he began startling more easily than before. Soon it became apparent it wasn’t even particularly harsh sounds that set him off. At the Center, the sound of running water began upsetting Rex so much he’d cover his ears every time someone went to wash his hands, accompanied by the ever-increasing screams of what had to be pain. Next it was light switches; the barest click was torture to his fragile ears. It was like my son’s little sensory system had lost any capacity to modulate. Normal sounds had become like fingernails screeching on a black-board. Touching everyday objects was as upsetting as if he’d stuck his arm into a hornet’s nest. And his emotions had become excessive, swinging erratically and at break-neck speed from one end of the spectrum to the other. He could be laughing hysterically one moment only to start screaming the next. Conversely, tortured crying could switch instantly to runaway laughter. It was frightening to watch the swing; it was as if some outside puppeteer was working the controls of my child’s body, whipping him around at will.
The sound of running
water began upsetting Rex so
much he’d cover his ears every
time someone went to wash
his hands, accompanied by
the ever-increasing screams
of what had to be pain.
By the time Rex was eighteen months old, his reactions to sensory stimuli were out of cont
rol, a daily assault to his body and mind—and to my own. I’d had no training in all of this. Indeed, life never gives training beforehand on what to do if something goes wrong in the brain, especially in the brain of your child. What do you do when the wiring suddenly goes haywire? How do you unscramble it? None of those smart and elite college classes I’d taken as a Stanford undergrad explained any of it. Nor had there been even the smallest clue in all my life experience abroad. And to top it all off, I had no time to think. The six months since a shunt had been inserted into Rex had placed me in a frantic state; much of my time was now spent on damage control to his newly sensitive body rather than helping him make developmental gains. Rex and I (and William when he wasn’t preoccupied, or was it avoidance?) had become hostages to his sensitivities—to his hands, his ears, and his mouth because he had begun to require almost liquid nourishment. Moving forward in life was relegated to second place, after the sheer effort it took just to hold our own on a daily basis against the tide of sensory onslaught.
The world had become a hostile place from morning to bed-time, where every part of life was a potential attack. It was an upside-down battleground where things didn’t make sense anymore. Not to my son, and not to me. This was made crystal clear on one dark, cloudy morning in January. A storm was brewing outside—and inside.
I was getting Rex ready for his morning at the Blind Children’s Center. Just back from Christmas break, he was eighteen months old, and his Mommy and Me teacher had invited me to confer with her while aides covered her class. I was hoping she’d have some advice, because we couldn’t go on like this. I’d gotten Rex’s pants on and pulled the neck of his T-shirt so wide it didn’t even graze his fragile head. So I was ahead of the dressing game when I started to put on his first sock.
Bunching the sock up so the whole thing would fit onto his toes with minimal impact, I said, “Rex, I’m just putting this sock onto your right foot.” I stuck the thing on, and he reacted, but then relaxed. I pulled it up quickly. Another startled reaction, but again, it passed. We were doing well today. Confident now, I said, “And here’s the left sock.” Onto his toes it went. One more tug of the sock, and we’d be home free. But then, as I was trying to pull the thing up in another smooth, noninvasive motion, disaster struck! It twisted and stuck at his heel!
High-pitched screams of pain hit my ears. He wailed like he had an open wound or like I was burning him with coals, not passing soft cotton over his foot! My hands were shaking as I quickly tried to undo the mess I’d made of his sock, straightening and sliding the thing “painfully” over his heel. Both of his feet began kicking full throttle, back and forth, like he was pedaling a bike, anything to avoid wearing shoes.
“It’s okay, sweetie. You’re okay,” I assured him, all the while sensing how far he was from okay. “Your socks are all on now. We won’t put your shoes on yet.” I rocked him in my arms to calm him. Once Rex was calm, I hoisted him into his high chair and handed him a cup of milk.
“Here’s a nice, big cup of milk to get your appetite going.” He loved milk, and the cold liquid soothed him further. I wouldn’t even try to force anything more than dried cereal into him this morning. “And I’m pouring some yummy Cheerios onto your tray. When you’re ready, you can just pop them into your mouth.” But today the sound of the dried bits hitting the tray made him wince. Imagine, it was just Cheerios dropping on a tray! I berated myself for not placing them there quietly. He set his cup down, but instead of reaching for the cereal like he normally did, sweeping his hand slowly across the tray to find the round pieces, he curled his fingers into fists and batted them away with the back of his hand, flinging them onto the floor. He grabbed his cup back like it was a life preserver, drinking voraciously. Thank God he would still hold that. But then the phone rang, and it hit him like a bolt of electricity. Screaming, he dropped his cup, and the milk spilled onto his tray, dripping down to the floor, making a soggy mess of the Cheerios.
“Rex, honey, it’s just the phone!” I said as the phone call routed to the answering machine.
Rex rammed his fingers into his ears, his body beginning to shake as did mine. I lifted him out of his high chair and hugged him tight, singing in his ear. Physical pressure seemed to help his nerves as did singing, even if my voice was wobbly. Gradually, he calmed down. I set him back in his high chair with a new cup of milk, and then I went into the bathroom to wet a towel to mop up the floor. I carefully avoided running water in the kitchen so the sound wouldn’t destroy him further. I shut the bathroom door, ever so softly, to block the water sound.
I mopped the floor while he finished his drink. He placed the cup down and began drumming his hands on the high chair tray. The rhythm calmed him further, and he now seemed content. On the other hand, my nerves were already shot, and we’d barely begun the day. Not daring to upset him further, I threw his shoes and jacket into the bag, put him in his stroller, and headed for the car.
The dark clouds opened up as we pulled out of our garage, and light rain began falling. I love the soothing sound of rain and hoped it would calm both of our nerves. But our world was upside down. We hadn’t even gotten out of our driveway when Rex’s head started shaking like he was trying to fling something off his head. Then the movement seized his shoulders as well, and his hands shot to his ears, like he needed to get outside his body.
God, no! I screamed in my mind. Not the rain! He can’t be reacting to the rain falling on the car roof. Yet I knew that was exactly what was going on. “Rex, we can’t get away from the rain,” I pleaded. But reason had no place in our car. Not with my son’s dysfunctional brain. I tried a different tactic, cajoling, as he began moaning loudly. “It’s rain, Rex, and it’s a beautiful sound. The rain, falling on the roof.” I began a rhythmic chant. “Pitter-patter, pitter-patter goes the rain on the roof.” His body calmed slightly. “Pitter-patter, pitter-patter . . .” He was pulling his hands slowly from his ears, intrigued by my chant, but just then thunder boomed, as the sky opened up, pouring sheets of water onto our car roof, causing his moaning to escalate into screaming. Desperate now, I fumbled with the radio, trying to find something, anything, that would pull his attention from the torturous rain. Only static. Rex screamed even louder. I slapped the radio with my hand, as if that would somehow tune the thing. One preset button after another, until I came across a station that was static free. It was a classical station, playing Mozart. Just as I was ready to flip to another station, fearing classical music wouldn’t make a dent in Rex’s consciousness when pitted against the torrential downpour on our car roof, I realized my son’s body was calming down. His shaking abated, the tremors ceased, and suddenly he sat contentedly, serenely listening to a Mozart sonata, completely oblivious to the rain outside. Thank you, Mozart.
With Rex now calm, I allowed my body to relax. My shoulders loosened, drooping slightly, but then I suddenly realized my hands weren’t steady on the wheel. The car jerked to the right as I was beginning to spasm myself. I pulled left on the wheel, struggling to keep in my lane. Steady on, grip firm! My eyes twitched, blurring, and I knew Rex had passed his shaking off to me. Eyes on the road! With the downpour virulently assaulting the windshield, I began shaking my own head, trying to cast off my nerves, to get outside my own body. The battle raged on while my child sat completely absorbed by the music, cocooned in the notes.
I pulled the car haltingly into the Center and breathed hard. One breath, then two; I sat for a moment, breathing deeply, trying to collect myself before my conference. Rex was contentedly tapping his hands on his car seat, a smile playing at the corners of his mouth. I leaned over and kissed him tenderly on the cheek, then hugged him tight, allowing the touch to calm me this time.
I had to hustle Rex out of the car to avoid a soaking, but I managed to get him to his classroom relatively dry. I left him there and, with my body moving on autopilot, headed off to meet with his teacher, Linda. I sat down more heavily than I intended, and I barely had a chance to shift gears when she a
nnounced, “I’m concerned about Rex.” No beating around the bush or banalities, she just cut to the chase.
“Well, I’m concerned about Rex too,” I said defensively, still jittery from the morning battle. When would he be back to his old self again? “I’ve been brushing him and doing all that joint compression Jill recommended around the clock,” I said, referring to the technique his occupational therapist used to counter sensory defensiveness.
“I know,” she said, but repeated, with emphasis this time, “I’m very concerned about Rex. He’s so apathetic in class; it’s difficult to engage him in anything.”
“Of course he’s apathetic!” I said, agitated. “His poor little body has to spend all its energy defending itself against things like running water or rain!” I was getting worked up because I wanted answers, not more questions. Why is he apathetic? Why wouldn’t he eat anymore? Or stand? Or touch anything? How long was this going to last?
Linda didn’t say anything immediately, perhaps out of respect. I added, “He does perk up when you sing, and have you noticed how rhythmic his clapping is?”
“Yes, it is,” she admitted. “And he loves tapping objects,” she offered, but then added, “just not touching or holding them like he needs to.” Then she said, in a voice that was filled with empathy but was nonetheless frightfully direct, “I’m afraid Rex is autistic.”
Then she said, in a
voice that was filled with
empathy but was nonetheless
frightfully direct, “I’m afraid Rex is autistic.”
“Autistic!” I repeated in disbelief, thinking of the bizarre, detached behavior I related to autism. “That’s impossible. Autistic means unable to make social relationships; Rex is completely attached to me.” There was no denying that. His personality shone through one-on-one with me.
Rex Page 4
