JEFFREY: A CHILD'S HOLACAUST

Chapter TwoIn person, in the flesh, we had arrived. Strangely, yet decisively so, my soul could not release Jeff's past to the present.

He looked normal at birth, in every way. A robust little guy with slight blond hair, blue-blue eyes, and boyish features--God made him absolutely beautiful. In the hospital I would always greet him with, "Come here, pork chop!" when brought by the nurses for his feedings. His big, fat cheeks reminded me of just that--pork chops.

His baby days were only atypical in that he clung to his night-time feedings. Appetite always adequate, he tripled his birth weight months before his first birthday.

Still--something was mysteriously wrong. I felt Jeff lacked that emotional bond a mother senses from her babe. His feelings and mental disposition seemed unrousable. "Roy, I have this strange feeling about Jeff--" I recall explaining to his natural father. "There's something wrong... He just doesn't seem to respond appropriately to me, or his immediate surroundings. He sees--but, he doesn't see. He hears--yet, he doesn't hear. He responds--but then, not in answer to me.""What are you talking about?" Roy replied. "He acknowledges me... He knows who I am. You nurses--always looking for symptoms--for something wrong. Go back to sleep, before he wakes you up again." I laid there wakeful, reprimanding myself. "Perhaps he's right," I pondered. "Maybe it's the way I explained it to him--but, I can't EXPLAIN it. I'm perplexed, and a bit frightened." Nonetheless, I tucked it in my memory bank. Jeff crawled like a locomotive. I would comment to friends and relatives that he crawled faster than I walked! However, he just couldn't take that first, solo step. "His standing balance seems off to me," I related to Grandma Nesbit. "Oh, honey, he's fine--look at him! He's just afraid to let go of things for now. It'll come." Watching Grandma "walk" him, chubby little hands tucked securely into hers, he did move assuredly forward. Letting go, Jeff immediately landed on his bottom, with streamlike flowing tears. "Boom on the butt!" Grandma exclaimed. The family laughed reassuringly.

Day after day I watched him, leaning on the livingroom chairs and coffee table for support, indifferent to attempting that first step. "Come on, tiger...you can do it!" I coaxed with earnest voice. Yet, Jeff wouldn't let go. Fearfully he clung, retreating from the task at hand. I began a mental countdown. At t

12 months of age, the mother within me mused, "It'll be any day now." The nurse part of me retorted, "But you KNOW he isn't ready. If walking is delayed, it will only substantiate your suspicions.""But--he must walk. He must walk on time!" At 13 months I reminded myself, if Jeff walked THIS month, he would still fit into the "late walker" stage developmentally. "He's a large youngster," reassured our favorably-known pediatrician. "He can't possibly support his weight and large bone structure with those tiny feet. Be patient.""He's only trying to make me feel better," I reasoned. "He suspects problems, but doctors don't act upon professional hunches. Time will tell..." "Come on, honey," I reassured. "Bend and stretch--bend and stretch," as I actively worked Jeff's large muscle groups. "Mommy's going to make those leg muscles stronger." By 18 months of age, still no progress. Roy and his parents seemed to be more preoccupied with the little boy emerging in Mike, and darling of a 5-month-old in Linette. I turned to my mother for support, as Roy was absorbed with his role of wage-earner, and subsequent adjustment to having acquired three children by our third wedding anniversary. "Mom, there IS something wrong," I conveyed tearfully over the telephone. Jeff's so frustrated--so unhappy with life. He wails most of the time. He isn't walking--and he drools, and DROOLS. His chin is so chafed--nothing I put on it seems to help. I know there is something very, very, wrong.""What does the doctor say?" my mother inquired.

I proceeded to relate our pediatrician's nonchalantattitude, describing Jeff in every detail. Mom, never one tojump to conclusions, just listened in her loving way."Let's take it day by day, for now, Noreen." I knew, without her admitting so, that in her wisdom, she understood--and believed. There was a mysterious truth to what I had related. She was only a phone call away, and her love would sustain me, to this very day. At 22 months of age--tottering, teetering, and staggering--HE WALKED! His big, blue eyes became as blue as the sea. A small grin appeared. He liked it ... HE LOVED IT! I laughed... I sobbed... I jumped up and down, raising my arms to my head in disbelief, wonder, and amazement. Regaining my composure so as not to startle this precious little child, I knelt on the floor extending my arms, praying that he would come to me. He teetered, but a soft ... oh so soft... little hand stretched its fingers to touch mine. The tears flowed ... and I sobbed, vowing to this sweet little bundle, "I will always be there for you, Jeff.""Boom on the butt" became our trademark statement for consoling Jeff that it was OKAY to fall down; but, that he must trust his long-awaited ability to also GET UP.Still, another problem was surfacing "I can't understand a single word that boy says," quipped Roy. "It's like he's in a world of his own. You're the only one that understands his garble." And so it was--major developmental lags were unfolding; the months passed without Jeff meeting those developmental timelines that parents attentively watch for. Jeff seemed to be stagnating. The emergence of the "terrible two's" was to become his childhood logo. Loud, fitful crying accompanied repeated attempts to accomplish goals at play. Jeff felt powerlessly self-defeated, and I sensed this innermost defect. Quiet play, for Jeff, was attempting to put a pegboard puzzle together--not knowing that Mickey Mouse's ear was, in fact, his ear and not a foot. Quiet play, for Jeff, was TRYING and TRYING to make that darn piece fit, once he understood how to properly position it, but being unable to line it up so the piece would fall into its corresponding puzzle slot.

High-pitched wailing would accompany these failed attempts--the nearest toddler being clobbered on the head with the puzzle frame. Jeff NEVER seemed to notice the pain inflicted during these outbursts. As his mother, how I truly hurt for him. I was also beginning to suffer for his brothers and sister.

Even block-building became a disheartening experience "Tiger, let mommy help you with your blocks," I soothed, desperately working to strengthen his finger coordination; while giving him that skyscraper he so terribly wanted. "I'll help you make that BIG building. Let's see how TALL we can get it this time." Plopping down beside him, I tried to fold his plump, little fingers around one alphabet block at a time, steadying his hand so the block might balance atop the last. As the skyscraper grew, so also did Jeff's growing need to knock it down to smithereens. Victory...I pondered. CRAASH! Jeff let out a triumphant sigh of relief. With kitchen and living room areas becoming more suggestive of a nursery school setting, a "normal" pre-schooler would have been delighted with siblings and toys available. Nevertheless, there was virtually NO play interaction with his brothers and sister--no playing house with Linette...no Jeff the cop after the bad guys...and no making car noises across the kitchen floor with Mike's and Mark's endless collection of Matchbox cars. There was only Jeff--lost and bewildered--seated beside them in ritualistic play. Day after day, he would painstakingly dump the alphabet blocks out of their muslin bag, so they landed directly on the floor in front of him. One by one, the blocks would be tossed OVER AND BEHIND Jeff's left shoulder. Sitting, he would stare without purpose, deprived of reason--and throw each block, confidently anticipating its roll into silence. Only then would another block be jerked upward, over his shoulder, to nestle near the others. Jeff never looked to see WHERE his blocks landed, apparently satisfied they were directly behind him. And so, the formality continued, until the last block had been thrown to its place of rest. Unaware of his surroundings, Jeff would decisively turn and face his collection, only to repeat this operation--again, and again, and AGAIN.Distraught by this indulgent activity, I helplessly resigned myself to the inevitable conclusion--my child was emotionally ill. Restricted by his mind, yet physiologically normal, Jeff could expect to live a long life span. I deeply--most profoundly--grieved for him. "A child deserves to innocently and joyously explore his newfound life," I lectured the Almighty. "A child merits the gratification which comes from being loved. How can he RETURN love if he does not first PERCEIVE it... from others?"Becoming angrier "If You had to handicap him, why not take an arm--or a leg? Must you have imprisoned his MIND? With a brain--emotions and FEELINGS--even a cripple is able to manage and function ...CAN satisfy, and BE satisfied." It was becoming more and more apparent that Roy was assuming a role of denial in terms of Jeff's difficulties. He also avoided contact with him, when possible. Strangely, I recalled a piece of my husband's past. His high school diploma was marked "Special." Although he readily admitted having gone through school in special education classes, he shied away from further explanation. A janitor, he followed in his father's footsteps. No matter what his occupation, I loved him.

As we were required to live on the premises where Roy worked--but much desired a home of our own--he changed positions, becoming a parts inspector for a tool and die firm. We rented a home, pending purchase of our own. He was a good man--a loving husband and father. Yet, his selfimage was extremely poor. Jeff looked so very much like Roy, but in miniature. I wondered if there was more I should know about my husband's past. Something tied in--but I didn't know what. Did Jeff perhaps remind Roy of himself as a youngster? Possibly I was inventing something that didn't exist. Maybe this man was mourning the loss of a "normal" child. How I anguished for him. Our fifth child on the way, I began to focus on the unborn baby I was carrying. Exhausted from five pregnancies in anequal amount of years, I had now become fearful and distressed regarding its prenatal condition. Months of waiting to come--it could APPEAR to be normal at birth, but WOULD IT? I shuddered, vowing my paralyzing fear should only be shared with God, in the event I was losing my mind.

One thing I knew for certain--Jeff was one of God's exceptional children. He had been entrusted to Roy and myself...as caregivers. I LOVED Jeff, and with that special bond was not only a protective mechanism--but a vigorous desire to help him...achieve normalcy. Although Jeff could not technically undergo intellectual and psychiatric testing until later that year--I became firmly committed. Jeff was my son; I was his mother... Curiously, Jeff seemed happiest cradled in Mother Nature's arms. Indoor confinement only exacerbated his nervous hyperactivity. He could not hold a crayon properly, and blunt-nosed scissors were used in a hedge-cutting motion. It appeared only therapeutic to balance his INSIDE playtime with heavy doses of monitored, OUTSIDE play activities. His Big Wheel clamored, seemingly impervious to anyone entering its path. I recall this tyke-driver, propelling his machine through an imaginary battle front, and stopping only long enough to greet a frenzied, elderly bystander-- "HI MUDDER F

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R!" Dashing after Jeff, I humbly blurted an apology to the old woman, who was obviously aghast at my son's salutation. Look for the humor in things, I reminded myself. At least THIS TIME--he chose not to spit at her! Relating this experience to his father, it was decided that "little pitchers have big ears," and daddy best refrain from using such language in the future. To no avail, Jeff discovered that THESE words had an attention-getting effect, and people NOTICED him with their utterance. I was to be embarrassed at church and school, grocery stores, and family gatherings...forevermore. As I was increasingly apologizing for the havoc this pintsized hulk caused in the neighborhood, I came to the realization that friends and neighbors were retreating from our family. Mental illness bears a stigma. The family, it seemed, was becoming its victim.

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Amie was born in late November that year. I insisted her heartbeat be monitored throughout my labor and delivery. I persistently refused medication or anesthesia of any kind. I also demanded watching her "lifelines" on the fetal monitoring machine. Nothing--absolutely nothing--could happen to this child.

Unlike my previous pregnancies, I was so much convinced--so obsessed that Jeff was brain-damaged--that I had to do everything in my power ... to prevent another tragedy from occurring. Joe O'Connor, a wonderful man and obstetrician, was aware of our struggle with Jeffrey. He knew my thoughts, and sensed my emotional distress. "I know what you're thinking, Noreen. We won't KNOW if the baby is like Jeff at birth... Let's put this in God's Hands." Almost fully dilated, I groaned with the intensity and rapidity of contractions--epicenter in my lower back. The nurse, aware of my professional status, reminded me, "It's a posterior presentation, hon. That's a lot of pain to be going through without help." "Don't worry--I'm fine," I whispered. Mixed feelings accompanied Amie's entrance into the world. And then... "I'm giving her an Apgar of 10!" Joe exclaimed joyously. I felt humbly grateful. Ten is the highest score observed at birth regarding condition of the newborn. It involves heart rate, respiratory effort, color, reflex response, and muscle tone."She's got 10 fingers and toes," The nurse spoke softly... reassuringly, as she lowered our second daughter into my awaiting arms. "She doesn't understand," I thought... "We can't SEE if she's normal," as I studied this beloved infant from head to toe. Perfectly photogenic, with facial features remindful of a porcelain doll, I held her--oh so tightly--in awe. "I must throw away these inhibitions--my paranoia," I scolded myself. And then..."Amie, I love you as Amie ... no matter what!" Returning home, I was not prepared physically, nor emotionally, for the daily tasks at hand. Four young children, and a newborn, was quite a load to handle. I believe the home would have been more manageable, if not for Jeff's constant need for reassurance and structured activity. Seized by this lifestyle, the moment and the hour--the days and weeks--stood STILL. Yet, the months advanced quickly. Jeffrey's little-boy strength was becoming another area of growing concern. As a father, Roy always felt that children required PETS...not that this mother needed to enhance her household cleaning aids with a pooper-scooper! I was already living in DIAPER TOWN." Enter Scamper, a white and black little guinea pig. NOW ENTER Jeff, who was somehow drawn to and pacified by small animals. See Scamper run... See Jeff catch Scamper... See Scamper LIFELESS ... "Mommy! Daddy!" screeched Mike, crying uncontrollably. "Jeff's squeezing the baby guinea pig!" Cuddling Mike, I cautiously approached our son. Still snuggling the little critter against his chest, I could not SEE our precious bundle. "Jeff, it's okay... You can let go now," I whispered, as I peeled his tense fingers away from the soft fur. Looking pensive, Jeff opened his hands slowly, gently exposing Scamper's lifelessness. Unconvinced that Jeff comprehended death, I tenderly scooped up the guinea pig, giving it to Roy for safekeeping. Taking Jeff in my arms, I asked, "Honey, do you know what happened?"Jeffrey only sucked his thumb... in response."Scamper is not alive, Jeff. Did you see--he didn't move, or breathe. He is dead." Later, Mike, Jeff, Linette, and Mark witnessed the grave dug. Mike placed a holy picture over the small tissue box containing Scamper. Quietly, oh so solemnly, the children stood ...watching."Scamper is living happily with God," I murmured."I hate you, Jeff--" muttered Mike. That night, after the children were tucked into bed, Roy asked, "Do you think he did it on purpose?" "I don't think so, Roy. We were right there. Jeff doesn't know his own strength. He wanted to hold Scamper so it wouldn't get away," I stammered. No further words would come ... Still, another clue to Jeff's mental limitations had been disclosed At the time, I truly believed there was no malicious intent to end a life. "But," I asked myself, "don't we as human beings have an inborn sixth sense--a power of insight or perception--that triggers A RED STOPLIGHT in our reason or mental powers?" Propelled by both instincts of fear and survival, a professional was going to LISTEN to me. Jeff's hyperactivity was definite; as a nurse I knew it was also treatable. It would be a start. The emotional component was obscure, yet there. At four years of age, I viewed Jeff as difficult to evaluate, because of his considerable reluctance to communicate to anyone, much less to a stranger in evaluative circumstances. I made the decision to sidestep Jeff's pediatrician, and place a neurologist-psychiatrist as primary physician. Concomittantly, I would touch base with our local school district, in terms of identifying appropriate placement for the next year. My faith always carried the prayer "Thy Will Be Done." My focus was changing to "You'd better give me the strength so that it CAN be done." Mike, Linette, and Mark were becoming justifiably ambivalent toward Jeff. That little-boy strength was breaking not only his toys in anger and frustration, but their possessions, as well.

I remember Linette approaching me--sulking--while she carried her baby doll, which was almost larger than she."Mummy, she ... broke." There was Crissy, head dismembered, looking not at all like a baby doll should look. Then there was Mike--industrious at age 5 with his Tinkertoys, creating Chicago's outstanding Sear's Tower; only to have Jeff dismantling it, as fast as Mike could erect it. The Tinkertoys quickly became an attic item, due to Jeff's poking and stabbing Mike during play. And so it was, finding the cost of private neurological and psychiatric services prohibitive, that I discovered the Fox Valley Mental Health Center in Elgin--chief of staff being the prominent Mortimer Gross, M.D.. Jeffrey was going to be reborn, I promised myself, on Dec. 12, 1974...the date of his neuropsychiatric evaluation with Dr. Gross.