Not Exactly As Planned

by Linda Rosenbaum

  We found a counsellor at the Hincks-Dellcrest Treatment Centre, a children’s mental health facility that worked with families of “at-risk” youth. In theory, we were going to get help raising Michael, but in all honesty, we were there just as much to save our marriage. The therapist at the Hincks wasn’t surprised. She had seen it all before with parents of kids with special needs. She wanted us first to explore our family backgrounds.

  “I come from a culture where family members were highly involved in each other’s lives,” I explained. “Even though there were secrets, as I brutally learned, on a day-to-day level we shared feelings, hashed things out, gave opinions. Lots and lots of talk. It was often messy and unpleasant, but part of being family.”

  “I was initially attracted to Linda’s straightforwardness,” Robin explained. “I knew she wasn’t beating around any bush, manipulating me or hiding anything. She said what she thought, even if it was unpleasant. It made life easier for me. My mother wasn’t like that.” Robin was never sure what she was really saying. “There always seemed to be an underlying message, something she wasn’t telling me.” The dishonesty left him unsure and confused. “I never had to second-guess Linda. It was refreshing.”

  Well, that lasted only so long. As problems crept up and we began to disagree on how to treat Michael, Robin wasn’t so sure he liked my straight talk anymore. “It’s hardly refreshing sometimes to know what Linda is thinking.”

  Where I once found Robin’s measured, reticent manner to be steady and calming, I was now seeing it as indifference. “I know Robin is sad about Michael,” I said to the therapist, “but his way of dealing with it is to escape. He closes off and clams up.” To ease his suffering, he was distracting himself with any electronic device within reach, be it radio, TV, computer, camera or video. Not surprisingly, the more I wanted to commune or confront, the more he ratcheted up his firewall. “I get angrier and Robin further retreats.”

  In our early years of parenting Michael, Robin and I talked about problems as they unfolded. Should he sleep next to us to make him feel more secure? Do you think the bright lights are making him anxious? Is it okay to feed him on demand? When he was crying and unsettled, we’d try to find solutions together and soothe one another. We shared a determined belief that we could make a difference in his life by how we raised him, no different than other parents.

  As years crept along, though, we began talking less and less about anything important. We were overloaded with problems, and too often, we differed on what might be the right way to handle them. To avoid a steady stream of arguments, we stopped talking. Parents often differ, but with a disabled child the stakes feel higher. We continually wanted to “correct” or teach or model. We thought we had the power “to fix.” Every move counted.

  Robin thought I was too firm and tough on Michael. I thought he was weak and non-directive. Too flexible, not flexible enough. Too unaware, too involved. Ultimately, too much anger.

  We clashed on whether Michael should do assigned homework or whether we should just stop harping about it in the interest of peace. We disagreed on how to make him do chores and what to do when he didn’t. We battled on strategies to get him to brush his teeth, wash or change clothes. We differed on what the consequences ought to be if he broke or smashed things. Should we punish him when he didn’t do things we asked of him or accept that he was damaged and ask less of him?

  From reading parenting self-help books, I even began to wonder if Michael needed a more militaristic type of father to get him in shape — a strict routine, discipline and no buts about it — rather than gentle, laid-back Robin. But Michael’s pediatrician tried to reassure me that the “fit” with Michael was perfect. “Robin’s temperament is just right for parenting a difficult, contrary child,” he said. “Someone else would have walked out years ago or taken the strap to Michael. They would have been at war with each other. It would be tempting to use physical punishment with Michael, but it would be the worst thing for him.”

  Still, every day there was something. I would get angry if I didn’t think Robin was “following through” when trying to get Michael to wash his hands and change underwear. Robin hated me being on top of him, thinking he was taking the easy way out. He thought I was anxious and overbearing. I hated being the one always negotiating with the school, camps, doctors, hospital, social services. He thought I was better at it so it was just natural I’d want to do it. Natural, my ass.

  The therapist went easy. “Most marriages aren’t ever tested the way yours is on a daily basis. That’s why we see so much divorce here. People think family hardships bring people together. It happens, but it’s unusual. People go through things so differently that they usually wind up suffering alone, get angry and eventually split up.”

  The therapist directed her next remarks to me. “Linda, you have such a verbal facility, you can run circles around Robin. It’s hard for him to take it all in, and it can be very intimidating. You may sound like you know what you’re talking about and come across completely sure of yourself, but I’m not sure that’s always the case. Your approach can have the effect of shutting Robin down. It’s not what you want, I know.” She was right on every count.

  The therapist was clear with one other important message, meant for both of us. While strong parenting was essential for Michael, it didn’t necessarily matter whether we were doing things my way or Robin’s way. “Maybe there isn’t always a right or wrong way with him. Maybe one approach doesn’t produce results appreciably different from another.”

  Right. My way didn’t get Michael to brush his teeth. Robin’s didn’t either. My way didn’t get Michael to make his bed or put dishes in the sink. Robin’s either. You’d think, then, we’d let up on each other. But we didn’t. There remained a little part of us that thought if we only did the right thing, we would help Michael develop. We both had such hope for him. We continued “to believe.”

  We were nowhere near thinking that there might be problems that had no answers. Michael seemed so capable on the surface, so we were forever wondering if his resistance to doing things, or being contrary to instruction, was because he didn’t want to do something or because he couldn’t. All of his teachers told us the sky was the limit for him because he seemed so smart. “He just has to try harder.” They believed laziness and lack of motivation were holding him back. Therefore, I refused to stop pushing, cajoling, encouraging and teaching.

  But I also wondered if Michael was more damaged than was apparent. I wondered if there really is such a thing as laziness? Or is there some hidden, undefined pathology that robs people of motivation, ambition and desire to succeed? I still wonder.

  Over time, Robin and I grew tired and cranky from the worry and the arguing about all of this, and somewhere along the way we lost the ability to comfort one another. We each started hiding in our own bed of sorrow. Eventually, with the help of our counsellor, we began to understand that the way we parented Michael, whether my way or Robin’s, was going to have little effect on Michael.

  “Of more importance to both his well-being and Sarah’s is to have parents who don’t argue in front of them.” It was probably even more important for Sarah who was so much more attuned than Michael to people’s moods and relationships. Several times I had to console her after Robin and I had a fight, assuring her it wasn’t because she had done something wrong.

  The counsellor was clear. “You and Robin need to rally to your children’s needs with unity. It’s more important than anything else you say or do.” We knew we were hurting the children as well as ourselves, but still, we didn’t always have whatever it took to completely jettison the anger.

  Fortunately, when Robin and I travelled, our problems seemed to vanish as soon as we hit the road, so we tried to get away often. Travel was the key to remembering what it was we loved about being together. It was a magical elixir to our troubled marriage. Undoubtedly, one of our trips’ positive attributes was the pact we made before we left: we wouldn�
�t talk about the children. It was always hard the first leg of a trip, but got remarkably easier as we hiked the Bruce Trail, rambled through England’s Cotswolds or ate our way through a Tuscan hilltown. We still called home daily, but never talked much about the kids afterward.

  Michael had worked his way through all the babysitters on the Island, so we were always on the lookout for some strong, level-headed young or older adult to stay with the kids during our absences. Someone looking for a challenge. Our version of a “handyman’s special.”

  My life had become more preoccupied by my children than I ever dreamed it would be, or wished it were. I had always wanted a family, but never expected it would so define me or have such an enormous impact on the way I lived. Fortunately, I had what I referred to as my “saving graces,” things that brought me pleasure and joy, and most of the time, they did. My saving graces, which included my friends, were essential, the much-needed counterpoint to periodic meltdowns I didn’t have the power to avoid. I never experienced panic attacks as severe as the time after the illfated airplane voyage, but there were periods when I couldn’t cope: everything seemed overwhelming; making dinner, paying bills, doing laundry, wrapping a birthday present.

  It was never perfectly clear when or why these dark days appeared. It once happened when things were particularly bad at school for Michael. Another time it happened when he was in an aggressive, destructive period and I never knew when he would erupt next. Other times when I fell apart, nothing seemed all that different in my life except my perspective.

  The depressions were relatively short, though always frightening. Perhaps it was one of the characteristics of the illness, but when in it, I was always afraid I might never come out. The thought only served to frighten me more. Fortunately, Robin was always comforting and optimistic during these periods. Equally fortunate, medication worked.

  The most important saving grace I had was my garden, a source of wonderment, frustration and comfort in my life. According to friends knowledgeable about such matters, my garden had equally been a source of therapy for me, especially during times of great despair over Michael. I reluctantly agreed. I did notice how deeply satisfying it was making nasty weeds, slugs and other dark forces of nature succumb to my brutish will.

  Writer Dominique Browning, an avid gardener, asked the question in one of her essays, “What really goes on when we give in to the compulsion to garden?” and answered, “Digging in the ground helps to fill the holes inside.” It was doing just that.

  Out of necessity, and possibly wisdom, we turned our backyard over to Michael when he was young. His energy was so physical and oftentimes destructive, he needed somewhere to dig, kick, punch, stomp, swing, slice, bang, slash, cut, chop and slice. We did live close to meadows, stretches of open land and playgrounds — however, not ours to do with as we pleased. This was a hard concept for Michael to embrace. We had to repeatedly say:

  “No, you can’t chop down trees to make a raft.”

  “No, you can’t dig underground tunnels and turn open flats of land into lakes.”

  “No, you can’t throw sticks and stones and dirt anywhere you please.”

  Then one day we had an idea.

  “Here’s the backyard, Michael. Take it, it’s yours. Go to it.”

  And he did go to it, rendering it useless for anyone but him. For over ten years, we never went outside our back door.

  That left me the front yard, and after years of work, it began to offer a welcoming face to the world, and to me.

  10.

  Six Years In: A Diagnosis

  Toronto, 1993

  ONE WEEK AFTER THE MEETING with the school board, Robin and I trudged off to The Hospital for Sick Children, 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 Robin 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 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 had Sarah to retest our parenting, Robin and I would have felt even guiltier t
han 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’s 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.