Shrinks, Part Two
Copyright 1995 by Adair N. Renning
Jerry and Asia continued with their Tae Kwon Do classes, but Asia's behavior became more and more disruptive. Jerry was asked to take the position of assistant instructor, to work with some of the younger children, and he tried to keep Asia under control too, but it was almost a full-time job.
One evening in November, I was on the telephone with my back to the door when they returned from class. Asia came in crying, and said that a bee had stung her hand. I turned around to see Asia looking very much like she had in 1983, three days after her arrival, covered with hives. Her face continued to swell while I was looking at her. As best as we could tell, the bee had stung her hand as she bent to tie her shoes in the grass outside the class. In the dark car on the way home, Jerry couldn't see her swelling face. Her arm was so swollen that we couldn't get her coat on. Meghann rode in the back of the van trying to keep Asia calm on yet another white knuckle ride to the emergency room.
Jerry had called ahead, and we were met by nurses with a wheelchair, who whisked Asia off screaming, while someone tried to steer me into a cubicle to fill out forms. "Give me the forms," I shouted, as I grabbed them in one hand and Meghann with the other. "I can't let her go in there by herself." She would have lost it completely if left alone with doctors.
Once again the epinephrine worked its magic, and we watched as the shiny swelling smoothed away, leaving her face recog-nizable again. Too bad they couldn't have tapped off some of my adrenaline--I had enough rushing through my body for three people. Asia and Meghann slept through a much slower ride home, and the following day the pediatrician prescribed an Epi-Pen kit (an auto injector), for any future bee sting emergencies.
Since our first venture into the world of psychiatric counseling had been such a bomb, we wanted to wait until after Christmas before pursuing any other attempts to seek counseling.
In the meantime, I spoke with other mothers and Mrs. Vollink, Asia's teacher, for recommendations. One psychologist came highly recommended, and we called for an appointment after the holidays.
Meanwhile, on the East Coast, Cindy and Steve had applied with the local adoption agency in Maine in January of 1990 and had taken the required six weeks of parenting classes. By March their home study had been done. Since they wanted to adopt an older child rather than an infant, and race or nationality was not an issue, the odds were in their favor for a domestic adoption. When she called early in December, there was no disguising the excitement in her voice. Her social worker had called. There was a little boy, almost three years old, in Texas. He and his eighteen-year-old Mexican mother had lived together in a foster home almost since his birth. His young mother had just recently made the difficult decision to make arrangements for his adoption. The agency had shown her several homestudies, and from them she had selected Cindy and Steve to be her son's new parents. The social worker asked if Cindy and Steve wanted him. "YES," was Cindy's emphatic reply. The pictures and more information arrived a few days later, and Cindy immediately mailed off copies to us. The beautiful little boy, whose name was Preston, looked just like Steve! It was uncanny. They had the same hairline, eyes, and shy smile. The following week Cindy and Steve flew to Texas, and ten days before Christmas brought their son home.
Jerry and I were both present for the first session with the psychologist, and again related Asia's history as accurately as we could to date. (By then we had it memorized and could recite it in our sleep.) This doctor recommended a variety of tests designed to determine Asia's capabilities and liabilities. By this time I had come to hate all the acronyms for the different labels for challenged children. I felt that people looked at the label not the child. But, it was explained to me countless times, the labels are merely tools and nothing to fear.
Fifty-minute sessions once a week were set up for the initial testing. Asia has never tested well; her attention span was non-existent, she couldn't sit still for more than a minute, and was usually doing three or more things at once (watching TV, jumping on the trampoline, and running to the couch to draw). Oh well, at least this doctor was spending time with Asia instead of us.
Because we had mentioned, and the psychologist saw, the "absence-type" spells that were recurring, Asia was sent to a neurologist, who scheduled an EEG and a CAT scan, neither of which showed anything significant. I told the psychologist that Asia was bothered by certain sounds, the baby seat in the grocery cart, the vacuum cleaner, doors closing, etc., so a hearing test was ordered, which was normal (normal if all the test was designed to measure was hearing loss). The psychologist's colleague went to Asia's class and observed her in the school setting. He noted her extremely poor impulse control and poor social judgment, and recommended the continuance of an aide to help meet her educational needs.
The end result was a diagnosis of pervasive developmental delay (PDD), and it was recommended that she take Ritalin to help with her lack of impulse control. The neurologist would prescribe it if we decided to try her on it. We had recently attended a parent support meeting where adults with attention deficit disorder (ADD) were discussing how the drug had changed their lives for the better, how they were more in control and able to focus and could stay on task--in short, a lot of the things we wanted for Asia. But after our first encounter with drug intervention, we wanted to do as much research as possible.
One of the possible side effects could be tics (involuntary muscle movements, usually in the head or face, sometimes vocal, sometimes vulgar), and if tics were already present, the drug could aggravate or intensify them. I had read that Ritalin had been implicated in causing full-blown Tourette's syndrome in patients with preexisting tics. Asia's "absence" spells, as I called them, were believed to be a form of tic. She was already jumping enough hurdles; the last thing she needed was another. We questioned the psychologist and the neurologist repeatedly and both assured us that the likelihood of the tics occurring was minimal, and if any did develop, they would go away, especially when she was off the drug. She would take one tablet in the morning and another at lunch time if needed, but none in the late afternoon, since it could interfere with sleep. Another possible side effect was loss of appetite. Ha! once again, not a chance with this kid. As much as we hated the idea of giving her another drug, Jerry and I reluctantly decided to try the Ritalin.
We picked the prescription up on Friday afternoon. We had decided not to tell Mrs. Vollink, because we wanted an objective opinion of any changes. Saturday morning after breakfast I gave Asia the first pill. It was hard to do anything but watch her. What were we watching for? I don't know. . . anything. . . nothing. . . something!
An hour or so later I was washing dishes when Asia came up to show me a drawing. She was always drawing and seldom went anywhere without pens and paper, but the drawings were doodles, occasionally faces, almost always the same. This time she had drawn her bicycle, complete with handle bars, spokes, horn, and pedals. I was astounded. Then she wanted to know how to spell, and asked, in rapid-fire succession, for the spelling of words and names. Jerry and Meghann gathered around.
Giving her a fresh piece of paper, Jerry said, "Draw the TV, Asia." And she did it immediately, looking from the TV to her paper to get every knob in place. Then she wanted to draw the bathroom, of all things. Her perspective was from the ceiling, looking down on the toilet, sink, shower head, even the soap dish. She couldn't do things fast enough. She even ate lunch faster, if such a thing is possible. She was busy, involved, absorbed, absorbing, as we had never seen her before. When she asked questions, she looked at us. She went from project to project until the middle of the afternoon, when she began to wind down. We were astounded. How could one little pill accomplish so much when years of work by teachers, doctors, us, had just scratched the surface. We all compared notes and agreed that it had not been our imagination--for those few hours, she had been on target, right there, all the time. We couldn't wait until Monday to see what school would be like.
On Sunday morning, I gave her the Ritalin after breakfast, before we left for church. We were certain that friends at church would be able to see a change. Normally Asia couldn't sit still, burst out with comments which made no sense, or laughed loudly at nothing during the service. We went to the early morning service, when there were fewer people, and they all knew Asia. She sat quietly and attentively for the first half (a first), but midway through the service, I felt (or sensed) a change coming over her, and suddenly, quietly, she began to cry. She still had very little language, and it was especially difficult for her to express her feelings, particularly sadness. We spent hours sometimes asking, "Why are you crying, honey?"
"Why are you sad?"
"Tears on face."
"No, honey, there are tears on your face because you are crying. Why are you crying?"
"You don't have to be sorry, honey. Why are you sad?"
"Eyes crying." Round and round we'd go, getting nowhere.
I put my arms around her and asked why she was sad. She couldn't even answer with her usual replies. Her face was flushed and contorted, and tears streamed down her cheeks. I took her outside to walk around in the warm spring morning and she finally seemed a little better. We thought maybe she realized that something momentous had happened the day before, and even though she couldn't tell us, she was glad. Maybe, just maybe, this monumental little pill had unlocked some internal door in our little girl, and she was overwhelmed at all the new sensations and feelings on the other side. We couldn't have been more wrong.
We went to the grocery store, as was our habit after church, and once again Asia began to cry, quiet, unbelievably pathetic tears. We comforted her as best as we could, with Jerry taking the lead so I could shop for the week's groceries, and by the time we got home, she was almost back to normal. We chalked the events up to emotions. We believed there had been a break-through on Saturday, and that once she became comfortable with the "new world," she'd be fine.
On Monday morning I gave her her pill, and sent her off to catch the bus. About 10 a.m. Mrs. Vollink called. I always held my breath when I heard her voice in the middle of a school day, and when she asked, "How are you?" as part of conversation, my reply was always, "It's 11 o'clock on a Monday morning, you tell me, 'How am I?' "
"Asia is crying inconsolably, and has been for about an hour. None of the usual remedies have helped--not talking, distraction, or music," she began. "We can't determine if she is in pain or sad or what. She doesn't even seem to know that we're there. Marsha has taken her outside for a while to see if swinging will calm her."
I left immediately to get her. I, of course, got no further than they had at determining the cause, but told Mrs. Vollink about the Ritalin. As a special education teacher she had had other students on the drug without these particular side effects. We were both at a loss, but I wasn't willing to give up just yet. I had been shown a vision of what could be on Saturday, and I was going to cling to it. I couldn't believe that the pill that had wrought such an amazing change for the better in Asia one day could wreck her emotionally the next.
I took her home and within a few hours the crying subsided and finally quit entirely. This had to be caused by something else. But the next day, at almost exactly the same time, the scene repeated itself, right down to me driving into town to bring Asia home. We tried to identify an outside source. There was major construction going on in the school; maybe the noise was too much for her. Maybe it was frightening her. Maybe the drug had unlocked some long-repressed memory from her early years in the hospitals or in the orphanage, and she couldn't express the pain she felt. But whatever was causing the spells, they were over in a few hours and then she would be fine for the rest of the day.
By Wednesday we were able to tell by her expressions when one of the anxiety attacks was about to occur. First her eyes changed. It seemed as though she could see something none of us could see, way off in the distance. Then the skin on her face began to look puffy and flushed, and then began to contort, almost as if it was made of "electric putty" with the voltage on high. Then the quiet tears would start, and she would begin to wring her hands and dig her nails into her palms and fingertips. Her arms and legs would begin to twitch, and she would wrap them around each other like some grotesque parody of "Cross your fingers, toes, eyes, arms, legs, everything." We came to call this "the pretzel." Each time the attacks occurred about an hour after taking the Ritalin and lasted about four hours, the amount of time we were told that the drug remained in the system, which was the reason for the midday dose for some children. (Asia was never given more than one pill a day.)
On Thursday morning I sent her to school without the Ritalin, and the dreaded hour came and went uneventfully. No anxiety attack. No crying or "pretzeling." In the meantime, I called the psychologist and the neurologist's office to let them know how things were going (or not going, in this case). On Saturday afternoon I had left messages on their machines about all the exciting developments of the day. Thursday's call was somewhat less than exciting. Neither doctor thought that the Ritalin was the cause.
When I called the psychologist, he said, "This is very unusual. Surely there must be something else going on. Are there any other changes happening in her life?"
"Well, actually, yes," I replied. "We've bought a house in Milan and we're planning to move near the end of June. We've told Asia about our 'new home' and she was there with us many times while the purchase was being finalized. It won't involve a change in schools [something I had insisted on when we began the house search] and she will actually be closer to schoolmates. She's asked lots of questions, but hasn't seemed too concerned."
"But, knowing how she resists change, and how rootless parts of her past had been, maybe she's more worried about the move than she can express," he said.
And not having the language to express her fears, she turned herself into a human pretzel.
I called the neurologist's office and spoke with a nurse, who relayed the information to the doctor and called me back. "Doctor suggests that you cut the dosage in half for a few days to see if that will help."
"But if it's the move that she's worried about, how will cutting the drug dosage help?" I asked. But, hey, who's the doctor here? Who has the degrees and went to college and has all the proper letters after their names? And why was I falling for this again? You'd think I would have learned my lesson by now.
So we cut the dosage. School was nearly out and the kids had half-days. Asia got out of school at 10:45 a.m. and cried all the way home on the bus. I remember one of the bus drivers telling me how concerned the other children were, because, trouble- maker or not, Asia was always such a happy child, with sparkling eyes and a radiant smile for everyone. Who was this child, and what had they done with my Asia?
During the weekend we tried the half dosage and Asia went out to ride her bike. It was early summer, not too hot yet, and the rest of us were getting ready to work in the garden. In about an hour I saw her, across the driveway, straddling the bike with her back to me, staring off in the distance. As I walked up behind her, her shoulders began to shake as her body twisted into a knot. Her face was almost unrecognizable behind the sheen of tears. I tried to unknot her arms and legs to pick her up, but ended up carrying her, stiff as a board, and started back to the porch, screaming for Jerry. He ran to take her from me, trampling through the peonies, not caring, as Meghann came out onto the porch. We all four sat in a huddle, our arms wrapped around Asia, rocking and crying. She couldn't talk, wouldn't look at us. Her face twitched and grimaced as her body alternately curled and stretched and jerked. By the middle of the afternoon the worst had passed, and we tried 17,000 different ways of asking why she was had been so sad. We got 17,000 versions of no response. On one rare occasion, I asked her if she knew why she was crying and she replied, between sobs, that she didn't know. We began to notice that after the spells were over, facial and shoulder tics would remain, and more and more often her face would twitch or her shoulder jerk upward long after the medication was supposed to have worn off.
On Monday I called the doctors again. Try giving the pills every other day, they said. At school, Mrs. Vollink asked for permission to videotape Asia's behaviors. The camera was set up in a small room inside her classroom, where Asia spent time working one-to-one with Marsha Adams, her aide. Asia paid no attention to the camera. She chewed the ends of her fingers, her shoulders jerked, she hit herself in the head and under her chin with the heel of her hand, slamming her head back. She mumbled and babbled, "Jared has red hair." "What color my mom's hair?" She would jump up out of the chair, pace the perimeter of the room a few times, then sit down again. She poked at her fingers with a pencil. Marsha's patience never failed. During the worst times, when nothing else seemed to work, Marsha would take her outside to the playground swings. The physical release seemed to help, but sometimes she didn't even want that.
We were beginning to pack and clean in preparation for the move, and once again Asia watched solemnly as her belongings were hidden away in anonymous boxes. Maybe this was affecting her and she couldn't tell us. We tried to be supportive, to assure her that we were all moving together, that all her toys and papers and Touch and Tell were going with us. We tried to explain that she would be in the same school in the fall, with Mrs. Vollink and Mrs. Adams and all the kids. But we had no idea how much was sinking in. These pills should be helping her to deal with all this, not destroying her.
Moving day came and went, with trip after trip between the old house and the new, and Asia cried and twisted herself into positions a contortionist would envy. At the doctor's suggestion, we cut the dosage in half again.
Several days after we were in our new home, we set the video camera up on the tripod. I gave Asia what would be her last dose of Ritalin. I could have stopped right then, but I wanted a record of what happened. I felt that the doctors all thought we were exaggerating, blowing things out of proportion. No one could believe us unless they saw for themselves. We all walked around in a daze as the drug took effect and she began to draw in on herself. It had to be the pills; it couldn't be anything else. It couldn't be the move. We watched as she sobbed and twisted, oblivious to everything and everyone around her. We consoled and rocked and cried with her. She sat and tried to draw, but grimaced and cried, and stuck herself with her pencil. We took the pencil away. Between tears and sweat, she was soaking wet, her thick black hair matted slick to her head. She wouldn't eat, refused even macaroni and cheese. There was nothing we could do but wait it out. One-fourth of a tablet, in her system, lasted as long and had as devastating effect as a full tablet. God help us all if we had ever given her more than one. Finally it was over. She was back from whatever hell she had been to. Her smile returned, and with it her appetite, a sure sign that her spirits were improving. We heaved a collective sigh, flushed the remaining Ritalin tablets down the toilet, turned off the video camera, and tried to salvage the rest of the weekend. We had taped it, in part, to remind ourselves to try to stop anyone else who was told to put their child on this monstrous drug. And then we were done. We called the doctors and told them, and they assured us once again that the many facial and body tics would go away. After all, the drug is gone from the body in four hours, they said. The tics did not go away. She twitched and jerked like a puppet, with not part of her body in sync with any other. She talked to herself. She clawed her arms and peeled the callouses off her ring fingers. She twisted her body as her face contorted uncontrollably. We watched in helpless frustration, paid the bills and took one more step away from the medical establishment.
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