JEFFREY'S STORY: A CHILD'S HOLOCAUST

Chapter 3

Hence began my "door-knocking days"--a two-year period whereby Jeff's mental acceleration/deceleration, linked with my own endeavors to understand and cope, touched an entire gamut of professionals ... within specialized evaluative and educational settings.

Jeff's encounters, coupled with my own earnest attempts to obtain professional assistance, were likened to a violent, unabating storm ... pitching all realms of reason into absolute absurdity.

Jeff's touch, as the years carried on, would evoke transition and change via a high-level job dismissal. The enforcement of both educational and mental health statutes would also be applied.

A knock on the door meant phone contact--personal interview or conference--with resultant pages upon pages of documentation. The listener would consider, but misconstrue. The listener would reflect, then overlook... The listener WOULD be informed--yet, DELAY action.

Distraught accountings of increasingly aggressive and disruptive behavior would be shared ... and the door was to close ... again, and AGAIN. Still, Jeff's ghost would haunt and prevail, long after physical contact had ended... Destiny would demand the adversary suppressed, and a child's cause carried.

Pending a wait of deveral months for Jeff's appointment with Dr. Overby, our pediatrician resolved to place Jeff on Ritalin, a mild central nervous system stimulant used widely for its stabilizing effect in children with behavioral disturbances. Ritalin was to remediate Jeff's inappropriate symptoms, becoming an integral part of his forthcoming educational and neuro-psychological assessments.

Preliminary testing determined Jeff's initial placement at the Transitional Kindergarten level ... within the Developmental Preschool Program of School District U-46.

My apprehension became a plateau of disquietude and fear, as I attempted to prepare my son for his formal introduction to school and classroom. Accompanying these emotions was the realization that Sue Greeley, Jeff's soon-to-be teacher, was in for a classroom eruption--the likes of which would NOT be forgotten. A deep, torturing sense of remorse inhabited my soul, as I thought of her and Jeff's classmates, pending that FIRST BIG DAY.

The blazing yellow mini-bus arrived, on a cool and crisp, gloriously sunny, September's day. Exchanging pleasantries

with the driver, I watched meekly as Jeff was safety-buckled into his seat. As I waved and smiled spontaneously at an expressionless Jeffrey, the vehicle quickly disappeared at the neighboring intersection.

THERE WAS ONLY SILENCE: No hushed wind rustling the leaves of a tree-dotted street ... no familiar barking of neighborhood dogs ... no chirping or cheeping birds--only the stillness of the moment blanketed by a cool, aquamarine sky. I was struck with the realization of my initial farewell--my first separation from Jeff.

Unlike Mike's entrance to school, in which I had felt good, whole, and PROUD--today I felt anxious, distressed, and broken, fearing the UNKNOWN. This fear was overshadowed with the thankful realization that other professionals would be spending time with Jeff on a regular basis--new, unbiased identification of his needs-with several hours of daily relief for myself and the other children.

I hurriedly entered the house, busying myself with the chores I wished to accomplish before Jeff's mid-day return. I had also made a vow to spend quality time with the other children in Jeff's absence

The phone rang... I gasped.

Though I had mentally prepared an apology, fully expecting a call from Jeff's teacher, I was to discover that it was the bus driver who was calling, instead

"Mrs. Nesbit, I had barely started picking up the kids on my route, when YOUR son began to run up and down the bus aisle, squealing and yelling! When I told him to sit down, he yelled 'MUDDER F****R!' I stopped the darn bus, and restrapped him to his seat. As soon as I restarted it, he was running and jumping again! I must have stopped five or six times just to CATCH him--not to mention what I went through to get him RESTRAPPED!"

"My God... I'm so sorry," I stammered.

"Mrs. Nesbit, I'm asking your permission to use a harness on Jeffrey-- We can't do it without your consent. It'll guarantee Jeff's safety and the protection of the other children who ride with him."

"By all means, you have my permission to use the harness. I'm so very sorry for Jeff's behavior," I responded with humiliation.

The weeks ahead offered rigorous challenge for both Jeff and his teacher. Upon entering the program, Jeff's behavior required his PHYSICAL REMOVAL from the classroom. Unmindful of the children around him, his focus was Sue, seeking her undivided attention in whatever way was most expedient.

Teaching Jeffrey the rules of the classroom was recognized as a critical, but long-term goal. To sit attentively and raise his hand BEFORE opening his mouth was inconceivable for this five year old!

Hence, a time-out procedure was started for extinguishing inappropriate behaviors. Simplistic in theory, the time-out removes the child from the group, thus stopping the undesirable behavior. After sitting quietly in a chair while facing the wall for a brief, predetermined time frame, the child is permitted to get up and return to his group.

An admirable presumption--but, it becomes short-lived when Jeff portrays a "linebacker" en route to his time-out chair; or the walls resound an earsplitting siren as he is forced to roost! Sue certainly had her work cut out for her...

In the weeks that followed, Sue identified Jeff's motor development as his weakest area of growth. Jeff was unable to hold a pencil or crayon properly. When able to touch the pencil or crayon tip to the paper, his drawing attempts were nothing but irregular lines.

Fine motor goals were formulated in terms of daily living skills which included buttoning, tying, lacing, and snapping. One goal, which particularly made me chuckle, was that Jeff would wash his face and hands WITHOUT getting his clothes wet!

In terms of gross motor functioning, it was learned that Jeff had difficulty maintaining his balance when trying to stand on one foot or kick a ball. He seemed bungling and inept in repeated attempts.

Though screaming and hollering had become his verbal trademark, speaking in a large group setting elicited a low, slurred whisper much of the time. As the speech therapist believed that Jeff made sounds on the side, rather than the middle of his tongue, articulation was addressed. Vocabulary development was also delayed.

Jeffrey's Mondays were no different than his Fridays. Those Mondays through Fridays rolled into frustrating weeks, and then... several months. Though Jeff exhibited a great desire for independence, his educational plan remained unchanged. Mary's goals, though rudimentary and essential, were unachieved at the time I presented my son to Dr. Overby, in Dec., 1974.

The Fox Valley Mental Health Center was located in a truly old, magnificently preserved building. Residentially situated, it was near the heart of Elgin's downtown area.

I recall the steep, white banistered stairs leading to Dr. Overby' office. Jeffrey timidly climbed one step at a time, holding the railing with BOTH hands.

A balding, yet distinguished looking gentleman, Dr. Overby, manner of speaking disclosed a profoundly educated-yet, terse individual. I quickly discovered this doctor had no intention of listening to my pre-written list of questions.

His sequestered session with Jeff concluded, Dr. Overby briefly explained his diagnosis of Minimal Brain Damage or Minimal Brain Dysfunction.

"I'm going to order an electroencephalogram or EEG, Mrs. Nesbit. Because I believe Jeff is making a nice response to Ritalin--although he's still overreacting and hyperactive--I suggest the Ritalin be tried at higher doses. We might even consider combining other medications with it, eventually stopping at where further increases do no good."

"Doctor, what is the prognosis?" I asked, hesitatingly.

"Mrs. Nesbit, we must be cautiously optimistic. Many of these children DO improve with time; but, no one can predict where they'll PLATEAU. Usually psychological tests around eight years of age are more definitive than those done earlier in life."

The spoken words violated my being as if I had just been raped! Believing yet not convinced--I realized as a nurse that there were many medical terms for this diagnosis; modern day medicine was but a babe in understanding its etiology or cause-much less being equipped to treat it.

Jeff's pediatrician, Dr. Wayne, and School District U-46 would receive reports of Dr. Overby' evaluation. Seven years would elapse before my OWN eyes would read his initial assessment in its entirety:

"Somewhat lethargic looking youngster

Sober and nonsmiling face, entire interview

Awkward gait

Unable to walk heel-to-toe, though understood

When asked to hop, attempted by picking up one leg with

his hand; unable

Sucked thumb at almost every opportunity

Repetitively made circles all over page when asked to

make a drawing

Held crayon with a great deal of awkwardness

Physical examination incomplete as he seemed incapable

of cooperating

Speech unclear

Answered "yes" to all questions

No concept of younger or older; bigger or smaller

Difficulty following all but simplest directives

Considerable reluctance to speak

NOTHING could get him to laugh or smile

Believe functioning at retarded level, but that

potential is higher"*

Driving home, I felt the double burden of shock and defeat. I had KNOWN the diagnosis ... Now, it was finally spoken. But I had looked for so much more than a diagnosis and prescriptions. The entire family needed HELP in coping and it was needed NOW! Where was the social worker, family therapist, or psychotherapist for that matter? Didn't this

specialist realize the family might not EMOTIONALLY SURVIVE

until Jeff's next scheduled appointment... in SIX MONTHS?

Sadly, I detailed Dr. Overby' findings to Roy that night. His frenzied outburst gave indication regarding his ongoing withdrawal from Jeff.

"So he's BRAIN-DAMAGED! I suppose you're going to blame ME for that!" Roy left the house, slamming the door behind him. I could hear the tires squealing, as he drove off...

And so life continued with its daily quality defined, for the most part, by Jeff's behaviors. Ritalin assumed its role in behavior modification. Sue, finding that Jeffrey's incessant jabbering abated within several hours of taking it, became excited with its increase. Effects, however, were short-lived ... within several hours of administration.

Hence, by the time Jeff arrived home for lunch, the same babbling, agitated youngster I had sent to school but a few hours earlier, was returned to me. Also critical to note was the fact that Jeffrey's behavioral symptoms intensified or were aggravated for a four to six week period BEFORE the desired effects of the increase became therapeutic.

Though Sue expressed much confidence in not only her teaching ability--but our parental capabilities as well--I wondered, as spring arrived that year, if teacher, mother, and father were not just enduring survivors.

One predawn morning, I awakened to the strangely suggestive sound of swishing and splattering water.

"What is that?" I sleepily asked myself, changing my bed position as the sounds persisted.

Becoming consciously roused, I murmured, "Sounds like fish... Sounds like FLOUNDERING fish... Oh my God, where's Jeff?"

Dashing to the aquarium in the living room, I found both. Poised precariously on a kitchen chair in front of the tank, with arms plunged shoulder-deep, Jeff reminded me of a grizzly bear determined to catch that salmon!

Not wishing to startle him into a fall, I cautiously approached, trying to maintain my composure

"Hey, tiger ... What are you doing?"

Looking at me and then back into the water, Jeff's expression imparted a sign of victory. Slowly, and with calculation, he raised his fisted hands out of the aquarium. A fish cupped within each, I shockingly observed the fishes, INSIDES were on the OUTSIDE! Peering into my husband's tank, I found its waters ... housed all DEAD FISH!

Later, narrating this episode to Sue, we found ourselves sharing similar suspicions concerning Jeff's Ritalin. "You know, Sue, we're damned if we do, and damned if we don't!" I stated.

"I know what you're saying, Mrs. Nesbit. Is Jeff getting worse on his own accord, or is the Ritalin responsible for his present behaviors? I don't feel we can make a professional judgment on it."

I interjected, "I'm keeping a log of what Jeff does, and it seems to me that we DO obtain a peak effect--a GOOD effect--at school. Because we're in a period of increased dosage, we won't really know--for maybe two or three weeks-whether the dosage is correct, or IF Jeffrey's behaviors will improve."

Sue continued, "This type of behavior requires flexibility and more tolerance from adults. Obviously, Jeff's a different child at home. From some of the critical incidences you relate--you must be saints! I'm aware that Jeff is capable of ALL these antics--and MORE! I can imagine how frustrated you get at times. However, you must remember where Jeff WAS emotionally, and how FAR you have brought him in these short months..."

At school, Jeffrey was beginning to take notice of his classmates by hitting and biting them. Though he now understood the classroom's rules, following through with them was a different story. In terms of his worksheets, Jeff was beginning to understand them mentally, but was unable to do them physically. My son's frustration was paramount, and his helplessness, coupled with an enormous desire for independence, bonded Jeffrey to Mary's heart.

By school year's end, time-outs continued on a daily basis, but Jeff now concentrated on the other children, to the point whereby Sue observed some cooperative play and interaction. Though Jeff could recognize his basic colors and numbers to ten, he was still unable to print his name.

The Metropolitan Test Scores, administered late spring as Dr. Overby had recommended, revealed Jeffrey as "Multiply Handicapped."

Jeff's EEG, though normal, had been obtained in a wakeful state only. Inconclusive without a sleep phase,

would not be until A YEAR LATER that one would be obtained.

With the school year drawing to a close, both physical and occupational therapies would be administered via the Easter Seal Association over the summer months.

Easter Seals would recommend continued physical, occupational, speech, and language therapies. Their evaluation tested Jeff in the lower third of the educably-mentally handicapped range of intelligence, but upper third EMH with Ritalin dosage increased.

His second interview concluded with Dr. Overby, and relatively free of children's schedules, Roy and I focused our energies into buying our first home that summer. We purchased a three bedroom, ranch-style house in Chalmers Grove, with closing and moving dates set for the first week in Sept., 1975.

With necessary transference of children's files and registration forms complete, I embarked on an educational mission for Jeffrey--a journey which would advance our son's cause, in 1979, to the steps of the White House--with resultant helpful efforts by the National Institute of Mental Health, Department Of Health, Education, and Welfare.

For now, enter the bureaucratically powerful and

malicious Chalmers Grove R-4 School District ...

I cannot for the life of me recall, when the principal at Sunny Hill School first made phone contact. Whether it be the third or seventh day that school was in progress, Eldon Greer's message was absolutely and decisively clear.

"You must come to school immediately and take your son home! "

"But--" I stammered, with thoughts racing wildly. "What has happened? I don't understand. How will he learn?"

"That's your problem, lady-- Just get him OUT OF MY SCHOOL!" Mr. Greer commanded.

Shocked and angered by his directive--yet, surmising the telephone would not be conducive to a sensible, nor productive conversation--I consented to come...

The above is a true story. Names outside of the immediate family have been changed to protect privacy.