Michael still could not handle much commotion or energy around him. Nor people. At his seventh birthday party at our house, he wandered off, unbeknownst to us and walked over to an elderly neighbour’s house for respite. The next year, we kept the numbers down, but realized halfway through the party that we hadn’t seen Michael since the party games began. We looked around and found him upstairs in our bedroom, door closed, under our covers, putting together his Lego pieces, as far away from the hoopla as he could get.
Even on days when only Robin, Sarah and I were home, he would go into his room and create fantasy worlds with animals, books, space Lego and Construx. He would play for hours by himself. When he was with other children his age, he could at best “parallel” play alongside his peers rather than interact directly with them. No conversation. He stayed with parallel play long beyond the age when other children had grown out of the stage. I found it hard watching them pass him by, one by one.
The only child Michael seemed to have some affinity for was Andrew. In many ways, they were like two peas in a pod. Peas with electrically charged nerve endings. The true Energizer Bunnies. They didn’t know they shared genes, but they sure knew they both enjoyed creating havoc. Both of them remained fearless, even on the ADD meds they were both taking. They were always crashing into furniture, banging anything that made a loud sound if clashed together, running away when called for meals and making messes everywhere, indoors and out. They brought out the worst in each other, no doubt about it.
Not that Michael was that much better on his own. He always pretended not to hear us when we said, “Don’t go further than the rope swing,” “Keep your helmet on when you ride your bike,” or “Put down that hatchet.” Wash up? Brush teeth? Change clothes? Put away toys? Come to the table? Forget it. I was devastated the day he whacked away the lower limbs on the Japanese maple sitting right outside our front door, using a homemade sword he had carved out from a tree branch. While my eyes were on something else, he knocked them off. One by one.
Michael did not do anything he didn’t want to. He was determined and stubborn. He whined, squealed or had tantrums to get his way. He was constantly testing our boundaries. We often broke our resolve to get Michael to do the routine activities of daily living, like getting himself dressed in the morning. His unholy squawk each morning wore us down.
Both Robin and I continually thanked Mother Nature, God, the biological imperative or whoever was in charge for providing Michael with a cuddly, adorable, sweet side along with this other, less adorable side. I don’t know what we would have done without it.
Fortunately, he still loved snuggling. When I read to him on the sofa, he burrowed into my side and tucked himself under my arm. Other times, he jumped up on our laps and settled in. If Robin was lying down with him in bed, Michael made sure as many of his body parts as possible had contact with Robin. If I was sitting up in bed watching television, he’d hop up, plunk himself down between my legs, lie back on my tummy and make himself at home. He loved the physical contact, something considered very unusual for children with FAS. We loved the physical contact with him too. It played a huge role in sustaining our love. We worried, though, what would be. One day soon, we assumed, his enjoyment of physical contact with his parents was going to end. How would we connect, then?
I took comfort knowing how much Robin loved the kids. Lesser men would have walked. In fact, Dr. Roberts told us that more than 80 percent of families with special needs children end in divorce. So it heartened me that Robin remained the proudest of papas to Sarah and Michael. He loved taking them to the Island tadpole pond and showing them off at work. He’d make them breakfast each morning, usually cheese omelets, or soft-boiled eggs with toast “soldiers.” As Robin liked to sew, every year he made the children’s Halloween costumes. His best was the year he turned our blond, blue-eyed Michael into a black-mustachioed carnival strongman, complete with homemade bar bells and furry, mock-leopard loincloth.
We received little support from any social service after Michael’s diagnosis. Nobody knew anything about FAS. Dr. Roberts was still with us, but she wasn’t a behavioural therapist or social worker. She didn’t know any better than we did what to do with Michael’s behaviour. I was in tears one morning over the phone with her. I could hear how helpless she felt listening to my pleas. But the truth was that she didn’t know how to get him to brush his teeth, do homework, say please and thank you or stop running around like a maniac. Diagnosis and meds only do so much.
Lynn and I perked up one day when a social worker from SickKids called. “There’s a support group for parents of kids with FAS. Give it a try.”
Thinking it would be good to talk with parents who had similar kids, we toddled off to a meeting in a nearby church basement cityside.
We all sat on folding chairs in a circle. The group leader asked us to go around the room, one by one, giving updates about our children and, in our case, a brief introduction.
Lynn and I kicked each other after hearing the first three presenters. We both knew it was time to get the hell out. Of course we couldn’t, so we continued to listen as one by one, depressed parents of much-older children told nightmarish stories about promiscuity, jail sentences, school dropouts, unwanted babies, children beating parents. All their kids had been diagnosed in their late teens.
It was my turn. I was conscious of how our situation was different than theirs, and I didn’t want to come off too Pollyannish. “Of course we were devastated when Michael was diagnosed,” I said, after giving a brief backgrounder on Michael and our experience at SickKids. “We’re feeling relatively optimistic about the future, though. Or at least we’re trying to. Since Michael was diagnosed at a young age, we have a lot of years to try and turn things around. With luck and a lot of support, we hope we can help Michael stay in school and develop skills to help him later in life. We have time on our side.”
Those who spoke thought I was naïve. “Yeah, we used to think like that too.” “You really think you can change them?” “Come back again in a few years, and let’s see what you think then.” A support group? They resented our early diagnosis. If they had had it, perhaps they could have had time to turn things around. But they didn’t have it. There was no turning around.
I was the last person they needed to hear speak. They were the last people I needed, too. Lynn and I never returned. I couldn’t find much help elsewhere. Down syndrome and autism had made it onto the world’s social service radar, to some degree. Not yet fetal alcohol syndrome.
Michael continued to do well in his LD classes. After two years with Mrs. G. and then another equally fine teacher, we were devastated to learn this would soon come to an end. Michael and his classmates were to be integrated into large mainstream classes with only one resource teacher to provide support. Recent elections had brought in a Conservative premier who slashed school budgets. No more special education classes in our area. Integration was the new buzzword.
While some parents of special needs children liked the idea of having their children integrate into mainstream classes, I knew it would be a disaster for Michael. He got lost in a crowd. He needed one-to-one attention from his teachers. He needed constant repetition to learn. He got bullied by “regular” kids. He needed special ed.
Robin and I met with his teachers to talk about next steps. If we could afford it, Michael should be in a private school with special education classes, they said. I had inherited a little money from my grandparents many years before. Now was the time to use it. After much research and on-site visits, we finally found a private school for Michael we could afford. In addition to school, other costs were adding up. We were lucky, though. Michael’s prescription drug expenses, close to $300 a month, were covered by Robin’s extended insurance plan with the CBC. But there were special needs summer camps, tutors, Michael’s weekly therapy with a psychologist, respite workers if Robin and I went away, family counselling sessions, costly psycho-educational tests.
Money w
as becoming an additional stress on the marriage. We didn’t need one more.
It was a summer sunset, Friday night. Sarah had set the dining-room table beautifully with the damask tablecloth and Birds of Paradise china I inherited from my mother. The braided challah we had baked that morning sat in the centre of the table next to the silver Kiddush cup holding preposterously sweet Manischewitz wine. We were lighting candles to usher in the Sabbath.
Sarah held my hand as we lit the candles and sang blessings. In the warm glow of our candlelight, we went around the table, one by one, giving thanks for whatever it was we wanted to give thanks for that week. My usual weekly gratitude “for family and friends” was considered routinely boring, as in “There Mum goes again.”
Michael took the prize for originality that particular night: “I give thanks for the light inside the refrigerator.” None of us could top that. After each of us had our turn, it was time to eat, having been tortured long enough by the perfume of brisket waiting in the oven.
I was as close to heaven as I was going to get — in this life, anyway. I loved our Friday night Shabbats. I felt they helped to bring a consciousness of the sacred into our everyday life. My children were learning to be thankful for the bread on their table, remembering loved ones who had passed away, and for one night, separating themselves from all that was worldly.
Celebrating Shabbat with my family was my childhood dream come true. I wasn’t for a second deluding myself, though. I was doing Shabbat as much for myself as I was for them. It was having children that gave me the opportunity to bring Shabbat back into my life after turning my back on it. All did not glitter on the silver Rosenbaum-Christmas Kiddush cup, however. Yes, we had been lighting candles on Friday nights for years. But no, it wasn’t always weekly. And when it did occur, it wasn’t exactly a romantic scene from Fiddler on the Roof.
On that particular Friday night, Robin was wrestling with a rambunctious seven-year-old Michael, whose sole interest was blowing out the Shabbat candles, getting out of his chair and going back to his room. After much coaxing and bribing, I had succeeded in getting Michael to the table, but like so many other Shabbats, the chaos came at a price. On this night, we managed to get him to stay until the brisket and roast potatoes were served, but once he began kicking and pushing his plate and cutlery around the table, we gave up and let him leave.
Robin had always encouraged me to do Shabbat, but it was often out of sync with our secular lives. If I mistakenly made other plans on Friday nights, I felt ashamed, guilty, angry, sad. I questioned the wisdom of marrying a non-Jew. I questioned my parenting. And I questioned my chosen, off-the-Jewish-grid life. I wrestled with all of these, but more often that not, ended up accepting the choices I had made.
When I told Robin I wanted to raise the children Jewish, it meant I wanted us to celebrate Jewish holidays, including the Sabbath, and build a layer of Jewish principles and ethics into the moral foundations we passed on. I hoped that sending the children to Sunday school would teach them relevant lessons from the Torah; religious and ancient world history; and the meanings of Jewish traditions, ritual and prayer. It would be my job to teach them to appreciate Klezmer music, Billy Crystal’s jokes, brisket and gefilte fish.
Though I did my best, I faced multiple barriers running a Jewish home. The Island was not a hotbed of Jewish cultural activities that the kids and I could participate in. Nor could we send the kids to a shule around the corner. Any place we went for Sunday school would involve a boat trip into the city and a long drive uptown.
Also, I needed a Jewish Sunday school where my blond blue-eyed adopted children whose surname was Christmas would be welcomed and made to feel comfortable. I also wanted to make sure Robin wouldn’t be perceived as a misfit because he wasn’t Jewish. Although some synagogues in the Toronto area had opened their doors to couples in mixed marriages, they were not great in number.
My first try for the schooling was at the Jewish Community Centre at Spadina and Bloor in downtown Toronto. Michael was eight and Sarah six. It had a progressive, non-Orthodox Sunday school. It was close-by, only half an hour by car or subway once off the ferry. Anyone in the community could send their children there, and both kids had already successfully gone to the JCC for summer and Christmas break camps. This boded well.
I made an appointment. I wouldn’t dream of enrolling Michael without first speaking to the director about him. He would not be their everyday Sunday school student and I had to see if they were willing to take him. If so, could they accommodate some of his needs?
My hopes were high as I walked up the steps of the JCC building. Based on the three years Michael had been at the Montessori school and in his new learning disabilities class, I thought that maybe he could function in a JCC classroom too. For all his problems, Michael had his strengths. We were hoping the JCC staff could build on them as the folks at Montessori had and the way his new teacher was doing.
“Do you think you can take him?” I asked the director after giving her the background. “Robin and I have seen that with the right teachers and environment, Michael does learn and benefits greatly from it.”
She didn’t hesitate. “Yes, we’ll give it a try,” she said. I was in tears, happily so. “I’m going to set up a meeting with Michael’s teacher and her assistant so you can explain what might be useful for them to know.” Brilliant.
I then let the director know both kids would be enrolled as Rosenbaum-Christmases. I would like to say she barely blinked. But how could she not blink when she had to enter the word Christ in the heading under Name of student. “We have other children from mixed marriages,” she said, “but your children will be the first Christmases.”
We both laughed nervously. My entry as a mother of the little Christmases into Jewish institutions had begun.
Michael and Sarah Rosenbaum-Christmas stayed for several years at the JCC. Sarah just rolled along successfully from one class to another. All of Michael’s teachers did their best to accommodate him, which mainly meant they allowed him to stare out the window and do his own thing.
At the end of his third year at the school, Michael’s teacher mentioned a Special Ed Jewish Sunday school that she knew of in the city. Michael was now eleven.
That summer, I met Dr. Zeev Greenberg, the school principal of Tikvah Hayim, the special needs Sunday school at Beth Tikvah synagogue, located in the northern end of the city, when I enrolled Michael. Beth Tikvah in Hebrew means “House of Hope.” Tikvah Hayim means “Life’s Hope.” For me, for Michael and the family, it provided both.
Dr. Greenberg was a former Israeli living in Toronto with his family and teaching at the Ontario Institute for Studies in Education. His Jewish Sunday school took every kind of special needs kid you could name. Kids with autism, Tourette’s syndrome, obsessive-compulsive disorder (OCD), and pervasive development disorder (PDD), learning disabilities, Asperger’s syndrome and hyperactivity issues. He would now take Michael, a kid with fetal alcohol syndrome.
Dr. Greenberg and his merry band of teachers — including a music therapist, otherwise known as an accordion player, and a clutch of male volunteers from the synagogue’s men’s group — did everything in their power for these kids. They wanted to make sure they came happily to Sunday school, learned, had a good time and felt good about themselves. What they did was called a good deed, a mitzvah.
The place started to pull on my heart strings the moment we arrived each Sunday morning to drop Michael off. Or, I should say, pulled on Robin’s heartstrings. For the most part, he shlepped Michael in the car up Bathurst St. each week. I continued to transport Sarah to and from the downtown JCC classes by streetcar from the docks. The school suited her well, though going there forced her to learn the term “schedule conflict” at an exceptionally early age. As we walked to the boat each Sunday morning, Sarah watched longingly as her Island buddies headed off to the soccer field for their weekly game.
Every Sunday, Michael rushed out of class, smiling, happy to see u
s. The teachers were cheery, finding something nice to say. Dr. Greenberg talked to us too, understanding our desperation. He told us what Michael did, not what he didn’t do. And he never forgot to call out to Michael as we were leaving, “I’m looking forward to seeing you next Sunday, Michael.”
Because of Dr. Greenberg’s positive attitude and optimism, I opened my heart to the idea that Michael could become a bar mitzvah at thirteen, only two years away. It was a long shot, but I thought we should consider taking a run at it. It was a bold notion, one that met with worry and disbelief from pretty much everyone I mentioned it to, including Robin. “It may be too much to ask of Michael.” I had to ask myself if it was a selfish dream. Was I setting my kid up for failure?
Maybe. Preparing to become a bar mitzvah involved hard work, study, cooperation and dedication. Michael had not yet shown interest in any of these. At the time of the bar mitzvah ceremony, Michael would have to stand in front of an entire congregation, read and sing Hebrew from the Torah in an ancient melody. After the ceremony, there was generally a social event of some kind to celebrate the child’s accomplishment. Michael was not much of a social creature, so we naturally wouldn’t plan anything big or overwhelming, but friends and family would insist on celebrating his accomplishment. Would Michael even go to a party?
An even more important questions was, “Am I completely nuts?” Possibly. We still struggled at home to get Michael to brush his teeth, flush the toilet and bathe. Or was this an inspired idea based on faith, hope and love for Michael? I mulled this over for months. After many conversations with Dr. Greenberg, I decided that Michael could accomplish something that would bring him pride, satisfaction and, perhaps, spiritual nourishment. We had no clue whether I was right or wrong.
Not Exactly As Planned Page 18