Excerpt: Not Exactly as Planned

October 12, 2014

Six Years In: A Diagnosis

This is a sponsored excerpt from Linda Rosembaum’s memoir Not Exactly As Planned. To be published October 20, 2014.

My husband Robin and I trudged off to The Hospital for Sick Children, our 6-year-old son Michael in tow. We were told that a child psychiatrist would collect background information about Michael at this meeting, followed by neurological tests a week later.

A tall man in a white lab coat met us in the waiting room. He introduced himself to Robin and me, and explained that he was a teaching fellow working under the clinic’s director. I was a little uncomfortable because he hadn’t introduced himself to Michael. Perhaps I had made a mistake by bringing him. The doctor assured me otherwise and led us to his office.

Without yet making eye contact or any other form of connection with Michael, he opened a file containing blank sheets of paper. He grabbed a pen, and began the questioning.

“Tell me when problems with Michael began to surface?” he asked. “When did you start to notice he was different?”

Robin and I looked at each other but said nothing. A little confused about what was happening, we just stared at the doctor, as if we hadn’t heard his question.

“Perhaps it might be easier for you to tell me what makes Michael so difficult.”

My stomach was churning. I could see the doctor getting frustrated by our silence but he pursued his line of questioning. “How does Michael differ from other children his age?”

Neither my husband nor I were about to answer. They were fair questions, all of which deserved answering. But we were not going to rhyme off a list of Michael’s problems in front of him. We were there to get help for Michael, not make him feel bad about himself. What were we supposed to say: “He was trouble from the day we brought him home?”

The doctor put down his pen and looked at us as if we were idiots, but carried on with his line of questioning. Both Robin and I remained tongue-tied.

“Tell me about the problems Michael’s birth mother had.”

I’d had enough. Michael’s birth mother had plenty of problems, but nothing Michael needed to learn about in a doctor’s office, if ever. It took me too long, but I eventually mustered the nerve to say, “Could I speak to you outside?”

The doctor and I got up and walked into the hallway. I shut the door behind me.

“I’m sorry to sound rude,” I said, noting that I was saying “sorry to sound rude” more and more before I said something, usually rude. “But I think your questions are inappropriate to discuss in front of Michael.” I was on a roll that I wouldn’t be stopping anytime soon.

“He doesn’t know the sordid details of his birth mother’s life, and you’re asking us these questions before even saying hello to Michael or explaining who you are?” I wasn’t sure what to say next, so ended with “I don’t want to go on with the interview.”

I thought the doctor’s eyes might pop out in front of me.

I excused myself, went back into the office and told Robin and Michael to pack up. “We’re leaving,” I said, and from my tone, they knew not to ask why.

I put in a call the next morning to the director of the Child Development Clinic to explain my actions during the previous day’s fiasco. I started with my usual apology. “I’m really sorry to be making trouble, but…” Though furious with yesterday’s doctor, I made sure not to rant and be dismissed as a lunatic. I took a deep breath and calmly explained what I felt the problems were with the previous day’s interview. I let the director know I hoped I hadn’t done anything to stand in the way of Michael’s getting proper care. “We need the clinic’s expertise.”

The wonderful Dr. Wendy Roberts listened, sympathetically. She understood my point of view. She would be pleased to take on Michael herself as his doctor.

Robin and I took Michael back the following week. Dr. Roberts and several members of her staff spent a day interviewing Michael, reviewing his medical and growth charts, testing his cognitive and neurological abilities, measuring social interactions and developmental milestones. Robin and I were on hold emotionally. On the one hand, we were scared to think there might be something seriously wrong with Michael. On the other, if there was something wrong, we could fix it. Right?

We still had self-doubts about our parenting, but among the many gifts our daughter Sarah had given us was the belief that maybe we were not so bad after all. Everything seemed to come so naturally for her, and therefore for us. If we hadn’t adopted Sarah to retest our parenting, Robin and I would have felt even guiltier than we did, assuming we were the central cause of Michael’s difficulties. Many friends had tried to reassure us with the phrase “It’s not you,” but that only helped a bit. It didn’t compete with the cold stares we had to endure in public places when Michael was wailing, or comments from strangers about his need for “more discipline.” All added to our self-doubt and chipped away at our strength.

The following week, we returned to Dr. Roberts’ office. Greeting us in the waiting room as before, she smiled warmly, offered a firm hand, and led us to her office. “I have the results from last week’s tests on Michael,” she told us. “I’m sure the wait was difficult.”

She was right. It was difficult, but it wasn’t only the week that had been hard. In some ways, we had been waiting for this moment since Michael was born in 1987. It was now 1993. During that wait, there were times I actually hoped one of Michael’s doctors would find something wrong so we could get on with the business of fixing it. More selfishly, I thought a diagnosis could expiate the never-ending stream of guilt and shame Robin and I were drowning in from Michael’s problems, and our inability to make them go away. Of course I felt shame having these thoughts. What kind of mother wishes for doctors to find something wrong with her child?

I watched as Dr. Roberts rummaged through a rumpled stack of papers on her desk. I tried to read her face. She was giving nothing away.

“After discussion with my staff,” she began, “we’ve settled on a diagnosis.” The fluids in my stomach took a nosedive.

She continued riffling through her piles, eventually pulling out two photocopied sheets of canary yellow paper. Without saying a word, she handed a copy to both Robin and me. A hand drawn outline of a child’s face was sketched on the page. Features, including eyes, nose, ears, and mouth were filled in and had handwritten labels attached to them.

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 wrenching 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 we heard 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 his birthmother 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, never be able to hold a job, live on the streets or worse. We would have 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 birthmother 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’ 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.

Linda Rosenbaum (lindarosenbaum.com) is an award-winning writer and lives on Toronto Island where she raised her children. She has worked in TV, documentary films and advocates on behalf of children with special needs. Her story about her son, “Wolf Howling At Moon,” won the Readers Choice Award in the 2013 Canada Writes literary contest for creative nonfiction.

Interview with Linda Rosenbaum

Excerpted from Not Exactly as Planned,Copyright (Demeter Press © 2014) by Linda Rosenbaum. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.