Not Exactly As Planned

by Linda Rosenbaum

  I told her about the “tunnel” between him and his teacher. She was speechless.

  ”Yes,” she told me. “You are right about the pills. And Michael’s teacher noticed exactly the same type of changes as you and Robin did. The Ritalin is clearly working.”

  Dr. Roberts agreed to stop the study. We soon met to talk about dosage, potential side effects and long-term effects. She prescribed week two’s dosage. It would be ten mg four times a day, every four waking hours. We were asked to watch him closely. We had to jot down everything that might be relevant in terms of his mood, spirit, side effects and/or his concentration.

  One thing we did notice was the uneven effect of the drug. We could see it slowly “taking effect.” We would then see it “working,” then “wearing off.” We could really see the wearing off period. It was in marked contrast to his behaviour while the drug was working fully. The wearing off period usually started roughly two and a half hours after he had taken the drug. With other children it was roughly three and a half to four hours before the drug wore off. Therefore, most kids were on four-hour schedules. We reported this to Dr. Roberts. She explained that Michael’s metabolism must be faster than most other children’s. She changed the dosage to one pill every three hours rather than four.

  Dr. Roberts warned us that she hoped the only obvious side effect from Ritalin would be loss of appetite. His appetite would come back after the pills wore off each evening. Not a good thing for our small Michael. He had never been a good eater so his eating would most likely get worse. Still, we thought he should try the Ritalin. Robin made Michael a three-egg cheddar cheese omelet for breakfast every morning before Michael’s first pill of the day kicked in. Then we fed him “make-up” food after the pills wore off.

  While on the pills, Michael barely and rarely put a bite in his mouth at regular lunch and dinner times. Around 8:00 at night, he made up for it. That’s when he would start eating his favourite foods, pretty much all protein or dairy. They included beef, fish, chicken, huge hunks of cheese, milk, ham and tuna sandwiches. Bagels, cream cheese and lox were a major hit, as were mashed potatoes. Even after the pills wore off he didn’t eat a huge amount of anything, but it always felt good to see him eat then. Seldom, however, could we get him to eat fruits, vegetables or grains, though this was no different than before he began the Ritalin.

  Robin and I had to weigh another possible side effect of the drug: growth retardation. Michael was already small for his age because he had grown so little during his first year. An endocrinologist we had been referred to had already told us that, at his present growth rate, he would be lucky to reach the short end of “normal” height range as an adult. He even predicted Michael would, at best, be five-foot-four. We certainly couldn’t mess up his chances for that. Dr. Roberts understood and said she would monitor his height closely to see how he was progressing. We could stop the drugs at any time if she felt it was interfering with his growth. With her reassurances, we decided to go ahead with the meds.

  It isn’t easy to put your kid on a drug. Particularly when you know he has to take it daily, until who-knows-when. I, more than Robin, was brought up in a very anti-prescription-drug home, so it was tougher on me than on him. I felt I was sentencing Michael to life on bad drugs. The positive effects of the meds were too clear — on Michael and on us. It would be cruel to deny Michael that.

  We gave Michael his meds at 7:00 a.m., 11:00 a.m., 2:00 p.m. and 5:00 p.m. every day.

  “Do you realize,” I asked Robin, “that this is the first time we’ve found something that actually helps Michael.” I would have liked to think it had been love, devotion and good parenting that did it, but it wasn’t.

  It was the meds.

  My mother had been mailing clippings to me ever since I left home at eighteen. Her choice of articles had been eclectic over the years, having included recipes for mandel bread, salmon loaf and, most recently, glowing reviews for the Cabbage Soup Diet. More often than not, the articles had been targeted for self-improvement. Most came from the Ladies’ Home Journal, Family Circle and Better Homes and Gardens, but newspapers were also represented, with clippings from the Detroit News, Jewish News and now the St. Petersburg Times. I’d received articles on how to fold sweaters neatly, swallow multiple vitamins at one go, dress appropriately for a job interview, keep whites white and choose the best Jewish Sunday school for your kids.

  Having recently told my mother about our decision to give Michael Ritalin, I wasn’t surprised to see a letter from her in the mail the following week. I knew a clipping would be inside. She knew, rightly, that her opinion might carry more weight with me if it came from someone else’s mouth. The clipping was going to tell me something negative about Ritalin. My mother hated prescription medications.

  I had thought twice about telling her about the Ritalin but went ahead anyway. I was a grown-up, right? I didn’t need to hide things from my mother anymore just because she might not like them. But I must not have been completely sure about this since I opened the letter and unfolded the clipping with caution. “Use of Ritalin in Children Overprescribed” read the headline. I wasn’t happy.

  My mother hadn’t exactly been overly helpful or encouraging since Michael and Sarah were born, so I probably over-reacted to something I thought was undermining my parenting. Rather than laughing at the clipping and taking a “there she goes again” attitude, I wanted to rip it into shreds, throw the pieces on the floor and scream the headline into oblivion.

  It seemed the whole world (which now included my mother) was appalled about the number of kids taking Ritalin. They were pissing on doctors for prescribing it, pissing on multinational corporations for making it and pissing on parents for giving it to their children.

  When I looked at the extraordinarily high number of Ritalin prescriptions in both Canada and the United States, my hunch too was that Ritalin was being overprescribed. Drug companies spent billions of dollars to convince everyone that attention deficit disorder is a disorder rather than the symptoms of normally active, oftentimes creative children (usually boys) who need more exercise and less sugar to keep their behaviour in check.

  Of course a certain amount of distractibility, messiness and acting out were all part of being a “normal child.” But a sloppy room, messy school binder, occasional tantrum and short attention span weren’t the reasons doctors were prescribing Ritalin for Michael. If his diagnosis of ADHD and script for Ritalin were based on a little distraction or abundance of energy, I’d toss the pills straight out the window. What parent wants to give a child medication every day? Not me, and my mother knew this. She also knew that without the Ritalin, her grandson could barely stay still long enough to dress himself, stand up and sing “O Canada” every morning at school, or look anyone in the eye. But with the medication and a devoted teacher, he eventually learned to read, print his name and string a few numbers together.

  Unfortunately, many children like Michael with ADHD had serious behavioural problems, showed extreme disorganization in everything they did, were hyperactive, had learning disabilities, impulsivity or aggressive behaviour, inappropriate social interactions and oppositional personalities. Individually, one or two such problems might not be serious. But taken together, those traits could seriously interfere with a child’s ability to make friends, learn how to read and write, tie his shoes, find his way to the corner store or develop loving relationships with his family.

  These children might need Ritalin. Like Michael. So I begged my dear mother as well as friends who didn’t like prescription drugs, “Why can’t you just be happy for those of us who have actually found something to help our suffering children?”

  Instead of a clipping, why couldn’t my mother have wired me a bouquet of roses or sent a gift certificate for a back massage?

  11.

  Facing Family Secrets

  Toronto Island, 1993

  I SPOKE TO LYNN AND DON IMMEDIATELY after Michael’s diagnosis. We were furious that Kira had
lied about her drinking. We wanted them to tell her about Michael’s diagnosis and find out the real story. No bullshit this time.

  But that wasn’t all we needed to talk about.

  The mood was tense when Robin and I walked into Lynn and Don’s house. It reminded me of the day Lynn came to our house to tell us Kira was pregnant. No room for small talk.

  The second we were all seated in their living room, I blurted it out, “Didn’t you know Kira was drinking? Why didn’t you tell us? Were you hiding it?”

  Both Lynn and Don looked stunned. It took a while before Lynn spoke. Like mine, her face was bright red. “We knew Kira was drinking during her pregnancy with Andrew,” Lynn said, “but we didn’t know it was an issue until the doctor diagnosed him with FAE (fetal alcohol effects). We actually didn’t know about her drinking with Michael. Even if we did know she drank, though, we had never heard of FAE or FAS.”

  Neither had anyone else, including us.

  Lynn wasn’t being cagey. Knowing Kira drank and knowing it was a problem were two different things in those days. That’s why Lynn didn’t understand what Andrew’s doctor meant when he told her he suspected Andrew might have FAS. Few people, not even doctors, had ever heard of fetal alcohol syndrome in 1987, the year Michael was born. The general public had no idea of the harm alcohol could cause. It might appear self-evident, but it wasn’t.

  It was like cigarette smoking. Hard to believe, but doctors smoked when I was growing up; some doctors even told patients to smoke for relaxation. People smoked in restaurants, airplanes, elevators and movie theatres. Cigarette companies sponsored children’s cartoon programs on TV. No one dreamed of asking someone to go outside to smoke.

  People didn’t worry about cigarettes until the U.S. Surgeon General issued his health warning in 1964: Smoking Causes Cancer. It was a revelation to the public. Same thing with alcohol. The first time FAS came up in the “literature” was when an article was published in The Lancet medical journal in 1973. Little showed up elsewhere in the next twenty years.

  We were in the thick of the AIDS epidemic when Michael was born, and that’s what everybody was worrying about. Not alcohol. They checked Michael for HIV and other problems at the hospital when they pronounced him healthy, ready to go. Who knows if they even thought about problems from alcohol or would even have known what to look for if they had.

  “I did wonder if you had thought about Michael having FAS when Andrew was diagnosed,” Lynn said, “but your pediatrician never brought it up with you. I was hardly an expert myself. In light of all the other problems you were facing with Michael, I thought you didn’t need my non-expert opinion. I didn’t want to be the one to raise the prospect of a lifelong issue.”

  Right, right, right.

  We left asking ourselves the Mother of all Questions. If we had known Kira was drinking during the pregnancy, would it have made any difference?

  “Probably not,” I said to Robin. I would have been more worried about crack.

  Robin agreed. “I honestly don’t remember ever reading anything about alcohol during pregnancy. People we knew were careful about drinking, assuming it couldn’t be good for a baby. But no one had a clue what the actual harm would be, if any.”

  Lynn met with Kira. Lynn told her the couple raising her son had been to SickKids, and he had been diagnosed with fetal alcohol syndrome. Kira knew what it was because Lynn had already told her about Andrew. “The parents need to know your drinking history during the pregnancy.”

  Lynn was surprised how frank Kira was. “Yes,” she said, “I did drink.” She didn’t remember when or how much. “It wasn’t steady, though. I’d binge sometimes.”

  She admitted to a long history with alcohol as a binge drinker, starting when she was thirteen, but “I hid it,” she said. Lynn said that Kira “didn’t seem comfortable giving it a name,” but “we can assume she’s a secret alcoholic from what she says.” Supposedly Kira squirmed when Lynn told her Michael had been diagnosed with FAS. “I could tell she didn’t feel good about it. But she never asked questions or showed interest in knowing more.”

  “Not much different than when we told her about Andrew,” Lynn continued. “She never accepted that Andrew had FAE. Her only response was ‘But he’s so smart.’ She glossed over it with Michael too.”

  I didn’t have a clue what Kira was really feeling, but there had to be some shame or guilt. If not, why did she lie to the adoption counsellor? Clearly, Kira didn’t want him or the prospective adoptive parents to think she was drinking. She knew it sounded better to say, “I’m drinking lots of milk” than “Yeah, I just downed a mickey of vodka.”

  Like the rest of us, Kira probably didn’t know enough about the actual dangers of alcohol. Nevertheless, she still knew it would be best for her if she kept her drinking a secret. Why else would she lie to the adoption counsellor if not to protect herself from possible disdain?

  So was she just like my mother, and even myself, protecting ourselves from what might happen if our secrets came out of the deep? Maybe. But unlike what I now felt for both my mother and myself, I had little, if any compassion for Kira. The costs of some secrets are too high.

  When we told people Michael’s diagnosis, I could see they were rethinking their perceptions of the past six years. Everyone, of course, first told us how sorry they were. No one knew anything specifically about FAS, so we spent a lot of time doing FAS101, then shared our determination to turn the dire prognosis around. They were sure we would.

  Many people, in their wisdom, asked if we were sorry we had adopted Michael. I was taken aback. Neither Robin nor I ever expressed regret or remorse. Michael had been our beloved lost soul since the day we brought him home. He didn’t change with the diagnosis. We already knew who he was. We now had a name to help explain it. Sometimes people or things come into our lives unexpectedly, whether through birth, adoption or other fortunes of fate. It then becomes our job to love them.

  As before, Michael was both difficult and lovable. Even during the relatively nightmarish period after he was kicked out of school, he retained many of his appealingly quirky ways. Each night when he was six, he asked for six pieces of cheese — his favourite food. On his seventh birthday, he asked for seven. The night before the birthday he told me, “Six was a good year, Mom.” I was pleased to hear it, but shocked. He had been through so much. Then he farted and said, “That’s my last fart as a six-year-old.”

  Part of the reason he could say “Six was a good year” was because of the change in his schooling. After that miserable Placement and Review fiasco, we had managed to get Michael into a learning disabilities (LD) class. The teacher at his new school rescued him from behavioural when she saw the much larger boys in the class repeatedly threatening him in the playground.

  The teacher was one more jewel in our lives, in addition to Dr. Roberts. Mrs. G., as she was called, was tough and demanded strict routine in her classroom. She was also kind and encouraging to her students, all trying desperately to learn how to read, add and subtract.

  I was so grateful to Mrs. G. that I volunteered in her classroom every Wednesday, bringing my little pal Sarah with me. On each visit, I was amazed at how patiently Mrs. G. went over and over the same words with students, trying to teach them to read. I would be bald from pulling my hair out if I had had her job. D-o-g, dog. C-a-t, cat. H-o-u-s-e, house. Over and over and over and over.

  I honestly couldn’t understand how the kids couldn’t get it. With all the repetition, explanation and time Mrs. G. spent on the sounds of each letter and the collective sounds they made together as a word, why didn’t it click in? But Mrs. G. knew “it” would come at some point and was hanging in willingly until it did. I constantly questioned how she had so much devotion and patience, and knew it had to come from a deep place.

  Slowly but surely, Michael started learning to read and write under her guidance. One day he came home proudly, wanting to show me he had learned how to print his first and last name. He took the p
encil and paper I handed him and sat down at the kitchen table. It was taking time, and I could see how painstaking the task was. Finally, he handed the sheet of paper to me and said, “Look, Mum.”

  Michael had printed his name mirror-image backward, starting from the right hand side of the page moving to the left, each letter backward. I couldn’t have done it if I tried. It helped me to have more compassion for the underlying neurology of learning disabilities and to better understand what Mrs. G. was working with in her classroom. She had a lot of brain pathways to unscramble.

  Michael’s spirits were picking up day by day in Mrs. G.’s class. One day he came home and announced, “I want to be a biologist.” His fascination and interest in the natural physical world was back in operation, so for his seventh birthday, my friend Sybil gave him his first pair of binoculars, bright red. My sister Barbara sent him his own Peterson Field Guides to Eastern Birds. He started going out with me again to bird watch, and now with his own field guide. Each bird we spotted, he’d find in the book and ask me how to write the date beside it. “So I can remember when I saw it,” he said proudly.

  Michael’s love for small, cozy spaces did not abate, even as he grew. He started calling himself a bald eagle and at night would pile up household sleeping bags to make a nest to sleep in. He would crawl into the middle then curl up and close his eyes. One night, just as he was dozing off, Robin said to him, “Mommy and Daddy thought we might be raising an ornithologist. Instead, we’re raising a bird.” Michael laughed and laughed.

  When Michael wasn’t a bald eagle, he was Fluffy the Cat who went around meowing and cuddling. He lapped up his milk and juice from bowls. He loved the attention Fluffy got. Sarah loved playing Fluffy with him. She was a dog, giving Fluffy rides on her back.

  Michael had begun to improve his eye contact with people when he started on the Ritalin. He began to say hello and goodbye as long as they said it to him first. He told Robin and me about twenty times a day “I love you, Mom” and “I love you, Dad.” It made us melt because the statements were unsolicited and he always seemed to say it at an appropriately warm moment. We had a saying in our family, “I love you with all my heart.” At some point Michael began to say “I love you with all my toes” or “I love you with all my teeth.” That, too, made us melt.