Not Exactly As Planned

by Linda Rosenbaum

  Robin and I looked up from our sheets and stared at each other. I was the first to break the silence. “It looks exactly like Michael,” I said flatly, as if shell-shocked.

  “The resemblance is uncanny,” Robin added. “It’s eerie.”

  “The drawing is used as a teaching aid at medical schools,” Dr. Roberts said, “to train budding pediatricians.”

  I looked at the drawing again, and for the first time noted the small letters printed on top. The sheet was titled Common Facial Features of Fetal Alcohol Syndrome. I looked at Robin, also studying the drawing, and noticed a slight smile forming on his lips. I understood. He must have just read the title too. It was the smile that comes upon discovery of something excitingly new, beautiful, profound, or so wrenchingly awful you can’t deal with the feelings it brings.

  “Oh my god,” he said in a subdued voice, eyes still glued to the paper.

  There was no room for disbelief or protest. Flat midface, short nose, indistinct philtrum (the area above the upper lip), thin upper lip, minor ear abnormalities, low nasal bridge. Check. Check. Check.

  All I could think was “Kira had been drinking with Michael too.” The liar. Why hadn’t we put all this together earlier?

  Even though Michael’s half-brother Andrew had been diagnosed with fetal alcohol effects (now known as “alcohol-related neurodevelopmental disorder” — ARND), considered a lesser form of the syndrome, our pediatrician never suggested the same might be true for Michael. In retrospect, I wasn’t sure why. Whatever the reason, we must have engaged in a strong case of denial on our own part. When Lynn talked about Andrew’s diagnosis, why hadn’t we questioned whether Michael should be checked too? But because of Andrew, I had done a bit of reading about the syndrome. Enough to understand that the diagnosis Dr. Roberts just gave us meant our son was brain-damaged.

  If we had been in denial, we were no longer. A part of our Michael’s brain was destroyed while in Kira’s womb. He was damaged in a way that said, if you looked at the statistics of the time, our son would quit school, would never be able to hold a job, and would live on the streets or worse. We had the next ten or fifteen years, at best, to see if we could change the prognosis.

  Tears streamed down my face. Robin, knowing me well, had come prepared. He reached into his pocket and handed me a tissue.

  Dr. Roberts finally spoke. “You’ll recognize Michael when I tell you that the earliest characteristics of FAS during infancy include trembling and irritability. The child may cry a lot, act agitated. As the child gets older, he may ‘flit’ from one thing to another; have short attention spans; be prone to temper tantrums and non-compliance; is easily distracted; often hyperfocuses and doesn’t respond well to changes, particularly when required to move from one activity to another.” The list went on.

  “But Michael’s birth mother said she didn’t drink during her pregnancy,” I said, noting how little conviction I had in my voice.

  “If at all possible, I suggest you go back and check with her again. Unfortunately, we’ve seen this before. The drinking history she gave you is incorrect.” Dr. Roberts left no room for doubt. After seeing the line drawing, we knew she was right. Yes, Kira had lied.

  Dr. Roberts explained that fetal alcohol disorders vary and are manifested in different ways, depending on when the mother drank and what areas of the fetus’s brain were affected. Tests showed Michael’s brain damage manifested as attention-deficit hyperactivity disorder (ADHD), possible oppositional disorder, and severe learning disabilities. His relentless skin picking was possibly some form of obsessive-compulsive disorder, or perhaps a Tourette’s syndrome type tic.

  “I know you won’t be surprised to hear that Michael has some autistic characteristics too,” she continued. “They showed up in his interactions with other children, but aren’t significant enough to be labelled Asperger’s syndrome, the type of autism he is considered closest to. But that explains his tendency to parallel play rather than interact directly with other children.”

  Dr. Wendy Roberts was a pioneer in the field of FAS and was devoting her career to families with children like Michael. She was one of the few pediatric specialists in Canada who could diagnosis the syndrome, unnamed and absent in the medical literature until 1973. That explained why Michael had been to so many doctors during his short lifetime, yet none of them even hinted at the possibility of FAS. Nobody knew anything about it. The problems associated with drinking during pregnancy eventually became common knowledge, but very few medical professionals had ever heard of fetal alcohol syndrome at the time of Michael’s birth in 1987.

  To Dr. Roberts’s great disappointment, the syndrome had been studied minimally since first named, though interest was starting to gain momentum. She was disappointed that more attention, money and research had been directed to crack babies. Despite the mythology and sensationalized media hype surrounding these newborns, evidence was showing that crack was much less harmful in utero than alcohol.

  “The toxic effects of alcohol are devastating to the fetus,” Dr. Roberts added. “I personally don’t think there is any safe limit, though the jury is still out on the issue.”

  “What does all of this mean for us, Dr. Roberts? What can we expect, what should we do?” I asked.

  “Unfortunately, there’s little research to tell us what the future holds for Michael. Recent findings are based on children diagnosed in their teens,” she said. “It means they hadn’t been diagnosed early enough for caregivers to make significant interventions in their lives.” She was trying to soften the blows of the dismal futures predicted in the literature. It wasn’t hard to see the effect her words were having on us. Robin was slouched in his chair, his eyes moist. I was unusually quiet, unable to dam a torrent of tears.

  “If early interventions had been made,” she continued, “the children might have fared better.” The majority of those studied led lives as predicted. They had dropped out of school, were living on the streets, unemployed or on welfare and were repeatedly in and out of jail by the time they hit twenty.

  “The part of their brain that affects impulse control is damaged,” she continued. “So is their ability to learn from their mistakes or understand cause and effect as we do. They may feel remorseful after doing something wrong, but it doesn’t mean they will have the impulse control not to do the same thing again. That may explain why they’re in and out of the prison system.”

  “I don’t want you to be too upset from all this literature,” she added, seeing our distress. “Michael is only six. With early diagnosis and intervention, he has a better chance than those kids for success in life.” She suggested we make an appointment for the following week to discuss the possible use of meds to help with some of Michael’s symptoms.

  “You two have already done a wonderful job with Michael. Most kids with FAS can’t bear to be touched and many don’t bond with their parents. The fact that he is so warm and connected with you is a testament to your love and hard work. He’s lucky to have you.”

  Hearing the kindness in her words, desperately welcomed and needed, my sobs deepened. Tears of sorrow. Tears of relief — a diagnosis telling us something was physically wrong with Michael relieved some of the guilt. And tears of rage — at Kira, the world, the gods, the Fates, everything and everybody — except Michael.

  In my gut, I had believed something was wrong with Michael, no matter what doctors said. Now, I no longer had to pretend everything was fine. I wouldn’t have to make excuses for Michael, Robin or myself. We no longer had to listen to someone telling us Michael was bad. We didn’t have to live with the confusion of ambiguity. We could take action, move forward. We could help Michael and turn the tide of expected events.

  “I feel hopeful,” I said to Dr. Roberts, with remarkable energy, then looked over to Robin. He was still slouching in his chair, bleary-eyed. I sensed it would be best to keep my momentary optimism to myself. Who knew how long it would last. Probably not very.

  We met with Dr. R
oberts the following week. I could tell when we walked into her office that she wasn’t her usually cheerful self. The contrast in her manner was obvious. I asked if something was wrong.

  At first she hemmed and hawed. Doctors don’t bare their souls to patients. I gently prodded, though, and eventually she told us she had just met with parents of another child with FAS, now ten. She had been working with the family for several years. At this morning’s meeting the parents told Dr. Roberts that they could no longer care for their child. The demands were too great and home life untenable. They were “sending” their child away to live elsewhere and were looking for some permanent option for his care.

  Dr. Roberts was devastated by the news. “I thought the family was doing extremely well,” she said. “I understood how difficult it can be at home, but I can’t imagine this child’s future without his parents. I wish there were something I could do.”

  I was appalled by the story. Never for a second, not even in my worst moments with Michael, could I imagine sending him away.

  “I’ll never do that,” I said quietly, under my breath. I had no idea what it really meant to send your child away. I just knew I’d never do it. “Never.”

  Dr. Roberts talked about some drug options for Michael, the first being Clonidine. She thought it might help reduce Michael’s aggression in the schoolyard, so that if he were teased or bullied, his response wouldn’t be so strong.

  Though the drug was developed to combat hypertension, studies had shown an unexpected side effect, to calm aggressive tendencies. Dr. Roberts had had some success using it with several children and found side effects to be minimal. Because Michael was still being bullied at his new school, we were willing to consider this option.

  Unfortunately, Dr. Roberts had no suggestions about Michael’s skin picking habit that hadn’t stopped since he was a baby. He still had open sores, and now scars on his body.

  She then recommended the amphetamine Ritalin for Michael’s ADD (interchangeably called ADHD, the H referring to hyperactivity). We knew, as did Dr. Roberts, that many of the symptoms interfering with Michael’s functioning had to do with his attention span and restlessness. Therefore, Dr. Roberts suggested he go through a three-part controlled study to determine if Ritalin would work for him, and if so, at what dose.

  We were game. We had tried many things over the years to help Michael calm down, pay attention, stop fidgeting, have more control, be less volatile and impulsive. All with little if any success.

  One of the things we did early on was to cut out sugar. Everyone from my mother and my hairdresser knew that cutting out sugar would calm Michael down. I read about cutting out sugar. I heard stories from mothers telling me that it would work. Why? Because their kids got out of control at birthday parties after eating just one slice of cake!

  So we tried it. We cut out all sugars for a few days. We noticed no effect. No one believed it. So we cut out all sugars for weeks. Still, no effect. We tried for months. Nada.

  Following other advice, we then cut out wheat. Then dairy. Still no reaction. My mother suggested we give fish oils. One of the teachers at Michael’s school knew a woman who treated children “like him” with a liquid vitamin B supplement she sold. The woman had seen miracles with the supplement. “Why not try it?”

  “How can it hurt?” I said. It didn’t. Nor did it help.

  I felt let down every time someone promised a miracle cure. We tried them all. I was hopeful, probably gullible. But why shouldn’t I try everything and anything for Michael so long as I didn’t believe it to be harmful. I needed to become thicker-skinned, though, because of the failure rate. Contrary to other people’s hype and good intentions, they didn’t know Michael’s body. I also discovered that some people love to talk about things they know nothing about. And, though I didn’t entertain the thought for long, I sometimes thought there might never be a “cure” for Michael.

  I told Dr. Roberts about our experiments with food, and the roller-coaster rides these new routines put us through each time. She understood, but was careful not to say anything negative about the practices of other professionals. She did say that research at SickKids had not shown that cutting out sugar, wheat or dairy helped their patients.

  “But some patients are extremely sensitive to Red Dye #2,” she said. “It makes them hyper manic.”

  She recommended we pay attention to any foods that might contain red food colouring. “See if it makes a difference.”

  We left it at that. Michael seldom ate foods that had red dyes in them, we thought. We became extra careful about checking labels, though, and soon discovered items we would never have expected to contain Red Dye #2, including candies and hot dogs. We learned that the hard way. Michael went absolutely batty at a baseball game.

  We were more than ready for the three weeks of drug testing. Each week, six-year-old Michael would be given either a dose of Ritalin at one of two different levels, or a placebo. We wouldn’t know whether he was being given the Ritalin or placebo. If it was Ritalin, we wouldn’t know which dose. Michael wouldn’t know either. Nor would Michael’s teacher, who would be spending the most hours with him every day. Not even the social worker from SickKids would know, though she was the one overseeing the study and interviewing Michael each week about how he was feeling and functioning.

  Only the pharmacist would know what Michael was being given each week.

  At the end of each week, Robin and I, his teacher and the SickKids social worker were asked to fill out forms to evaluate Michael’s behaviour, moods, and ability to concentrate, learn and interact with peers and family. The information would then be assessed to see which week he functioned best.

  When the results were tabulated we would know whether the placebo or the drug and at what dose was helping Michael.

  Ritalin stayed in the system roughly four hours. That meant Robin or I or his teacher would be required to administer a pill to Michael every four hours until dinnertime. We explained all this to Michael. Our six-year-old son was willing to comply. Funny, we thought. He didn’t usually agree to anything.

  I couldn’t wait to start.

  Week one began. We noticed a difference in Michael twenty minutes after giving him the first pill. It took twenty minutes for Ritalin to take effect. He was calmer, though far from calm. Didn’t fidget as much, though still fidgeted. He could pay attention better, but still didn’t really pay attention. He could follow instructions better, but still needed help. There was a marked change in him. A good change.

  “No way this could be a placebo,” I said to Robin.

  I was dying to call his teacher to hear what she had to say. I forced myself to hold back, though. I was not supposed to contact her during the study.

  Michael gladly took the pills the rest of the week. He told us he felt quite good.

  “Did you notice a difference in anything?”

  “Yeah, I think so.”

  “How?”

  “I don’t know.”

  Week one ended and we all handed in our forms.

  Week two started. Twenty minutes after administering what we were again sure was Ritalin but at a higher dose, we noticed another marked improvement in Michael. He was calmer, though not calm. His fidgeting had remarkably lessened. He paid way more attention to us when we spoke and actually seemed able to understand what we were saying. He still had trouble following any multi-step instructions, but was doing better.

  We went on with this for a few more days, remarking how enormous the difference was in Michael. I still hadn’t called the teacher. I was so sure about the results that I was even more determined to talk to her than I was the first week. I wanted to know if things were as markedly improved at school as they were at home.

  I had realized over the years that only Michael’s teachers or camp counsellors understood what life was like with Michael. They understood him better than anyone else we worked with, including the psychiatrists, social workers or doctors handing out advice. The teacher
s actually spent time with him. They had the same knocks, ups and downs and frustrations we did. The other professionals were all smart and well-intentioned when providing advice on how to parent Michael. Unfortunately, it was usually theoretical. Or if “proven,” it had been proven on kids different from our son. Michael’s teachers, however, spent all day with him. They weren’t talking theory. Their input and knowledge was of tremendous help to us at home.

  But as much as I wanted to talk to Michael’s teacher, I held back the second week, too. However, I did ask Michael once again: “Do you notice any difference this week from the drug?”

  “Yeah, I think so.”

  “Do you have any idea how it makes a difference?”

  “Yeah.”

  “How?”

  “Now there’s a tunnel between my teacher and me.”

  “I’m not sure what you mean, Michael.”

  “We’re connected.”

  I was blown away. Michael had described in his own words the profound affect the pill was having on him. There was a tunnel now. He was able to connect with his teacher. He had never been able to connect with anybody, really.

  “Anything else?”

  “Yeah, they make my ears pop.”

  Ears pop? This confused me. How could Ritalin make his ears pop? Then I realized. His ears had popped “open.” He could hear.

  Hallelujah, encore.

  The third week started. Nothing. We waited longer. Still nothing. Michael was back to the same old, same old. It was disturbing to see him go back to negative, self-destructive behaviour. Things had gone so much better at home with him for the past two weeks. We had almost forgotten how bad it had been before.

  I called Dr. Roberts. “I know the third week isn’t up, but I’d like to talk to you about the study results.”

  I told her I was positive the first week was a low dose of Ritalin. The second week a higher dose and the third week, which we were still in, a placebo. “Will you tell me if I’m right? Can we stop the placebo and put our energies into working out what’s best for Michael now?”