We submit to countless evaluations and questionnaires. I discover a whole new use of time. Already at that very first speech therapy session, it strikes me that I am sitting in the waiting room for a whole hour doing nothing, just waiting, with other parents. Just seeing their resigned faces shocks me. It is only the beginning.
In the years to come I will bike, bus, and taxi Maxi all over Manhattan to occupational therapy gyms and socialization and listening classes. I get to know new neighborhoods and I learn the relativity of time. I slowly broaden my horizons by opening up to this new world—a loving world.
The city offers an early intervention program to New Yorkers with disabled children. An army of young men and women comes to our house to give Maxi speech, physical, and occupational therapy and applied behavior analysis, known as ABA. The latter is one of the few proven interventions for autism. It is rough. I often hear Maxi cry with frustration in the other room. Maxi’s first fifteen therapy sessions are spent on pointing and following something when it falls on the floor. He is prompted to do so. Autistic children don’t learn anything by themselves. They have to be taught the most basic skills. Over and over again. It’s the only way. Maxi has to be taught how to point, how to copy, how to look, how to make word shapes with his mouth, how to play with toys, how to draw. Nothing is automatic. He has to be taught how to live.
Time after time, the therapist drops a toy from high chair only to have Maxi respond by staring into space. She will then take his face in her hand, turn it to look at the toy, and hold his finger to point at it. She speaks very loudly to get his attention. Not my style at all. But the only way to make progress is to find a way to penetrate Maxi’s world.
When Maxi executes the prompt, he immediately gets a piece of a cookie. If he doesn’t, he will not get anything. It makes him cry, but it finally works. He becomes eager to comply. He begins to love being given small and achievable tasks. To begin with, touching his nose or sitting down. Then, as he better understands what is expected of him, more complicated commands. He likes the praise (and the chips and cookies) that come with his accomplishments. He actually becomes eager to please!
Our luck doesn’t stop there. Not only does Maxi learn the skills relatively quickly, he retains them. Many autistic children can mysteriously lose an acquired skill just like that after all those hours spent on learning it. And contrary to common belief, autistic children are not necessarily brilliant. Eighty percent have lower than average IQ, and most have no special talent. Only special interests.
Keeping track of all the therapists is a full-time job. They are constantly telling me what we should and shouldn’t do. I end up having to resign from the bank to accommodate them. Each therapist comes with her own manual. Each has a master’s degree in my son’s condition.
At one point I find myself in an intervention meeting with all of them for not sending Maxi to a special-needs school. That is a big step. At the time, he is still going to the same preschool as Joosje. It has been our luck that siblings don’t get screened as much as the first child. He is given a full-time “shadow,” a person who is prompting him to be good. He is not aggressive, so why take him out of the regular preschool? Max is happy and I feel that good role models are essential for him. Mother knows best. But the older Maxi gets, the more obvious a misfit he becomes. Everyone feels uncomfortable: his teacher, the other parents, and his shadow. Uncomfortable is not why they pay the school or what the school gets paid for. I have no choice but to take him out.
Finding a special-needs preschool is a daunting task. Practically a nightmare. Wherever Maxi gets an interview we are welcomed warmly but are soon bonjoured coldly. All the schools I hope for reject him. We are lucky that Maxi falls into the twenty percent of autistic children who have an average or higher IQ, but most children in that category have Asperger’s syndrome and are, unlike Maxi, highly verbal. That means he is either too high functioning or too low functioning to get into many special-needs schools. Despite all the tea I drink with board members and the many pleading letters I write, there are always better fits on their lists.
Maxi finally gets into a preschool in a guarded building for the handicapped. That is a real adjustment. We help blind and severely mentally disabled kids find the elevator on the way up. My first reaction is to separate ourselves. To define that at least we are better off. I cannot yet see beyond disability. I still act out of pity, not out of compassion. Pity assumes superiority and feels condescending on the receiving end. It creates a separation. Compassion connects. It is a hard lesson, but I am starting to get it.
TOUGH LOVE
As he gets older, Maxi becomes more difficult. For months he just refuses to turn left. We have to take a taxi around the block in order to pick up Joosje from a playdate next door! That is, if I can get him out of the house at all, and not find him naked again after having dressed him four times.
For years he wakes up in the middle of the night and turns on all the lights and all the TVs at the highest volume. “Daytime,” he says. After that period he still wakes up at five a.m. every day. If I take my eye off him even for a moment, the craziest things can happen. He breaks eggs in a shoe or flushes my watch down the toilet. Yet slowly I come to appreciate the world at that early hour, before everyone else wakes up. Those hours belong to him and me.
Going out with Maxi can be precarious. There are countless embarrassing moments: In restaurants, when Maxi grabs french fries from someone else’s plate. At playgrounds, when he takes a toy from another child’s hand or knocks over a toddler. At the ice-skating rink, when he eats the ice. I often get scolded for being a poor mother.
Family picture, New York, 1999
Maxi, New York, 2000
Hiking, New York, 2000
I try to find a way between adapting the world to his needs—indeed, very special—and adapting him to the world’s expectations. I try not to give in to his need for structure and repetition. I tell him to overcome his fears and shower him with praise and kisses when he does. I do not give him medicine, but tough love. And as time passes, he learns. To listen. To turn left. To skate. To bike. To wait for his turn. To not grab food or eat snow. . . . To adapt.
SEPTEMBER 12
NEW YORK, 2001
“And I don’t know a soul who’s not been battered.”
—Simon & Garfunkel, “American Tune”
That is the song I listen to over and over again the day after September 11, 2001. To comprehend what has happened. To give in to the bewilderment and enormous pain I share with my beloved New York.
I send it to my friends around the world. It best reflects what I am feeling. What we are feeling. For the first time in my life, I have become part of a collective trauma. I do not matter. I do not want to matter. I just want to help. Really help. Like a true American. I always have been impressed by how quickly Americans organize themselves in times of need. I want to give my coat to the expressionless strangers walking uptown like robots. A migration of people covered in gray dust. Or is it ash? I want to translate at the emergency centers. I want to tell people to keep on flying, as I have done. I suddenly feel what community spirit means. This is our community. This is our city burning. The gray smoke has slowly overtaken the blue sky. It comes with that smell, the smell of death.
To me, Union Square has always represented the essence of New York, with its variety of people sharing hardship. In our urge to be downtown, Jaime and I walk past the square. There are pictures of missing people everywhere. The restaurants are packed. Everyone wants to be out, to connect. There is a giant banner: “New Yorkers are the Toughest People on Earth.” Normally, that would irritate me, how Americans use words like earth and world, even universe, for their own emotions and dreams. Now I agree. It is September 12, and everyone is a New Yorker today.
The day before, I was tidying a closet in Maxi’s room with Nana, his nanny. Maxi and his ABA therapist were also in the room, sitting opposite each other. Maxi had his little hands in his lap as th
e therapist had told him to do. She was teaching him to say, “Stop.” She was pushing a wet cloth into his face, again and again, and he just kept ducking away. Jaime was in our bedroom getting ready to leave for work. He was late. Our colleagues were already at the office. I was going to be even later, as I had a meeting at Joosje’s preschool.
“You better come and watch this,” Jaime screamed from the bedroom. I walked over and glanced at the TV. I saw a plane hitting the World Trade Center. Still thinking about the closet, I shrugged it off. Why does he always show me planes and plane crashes? As if I have a special affection for them! And why do they let those little planes fly up and down there anyway?
I went straight back to the closet. Maxi was crying by then, and I got more annoyed as my poor little son was being purposely irritated.
“Stop,” he finally cried.
“You really have to watch this,” Jaime yelled, and there, on my bedroom TV, we saw one of the towers collapsing like a rectangular mushroom. Or was it melting? We called in Nana and the therapist. We were all standing there in silence with our mouths open, looking at each other in disbelief, when we suddenly realized that Joosje was seeing it too. “I have to go to the office now,” Jaime said, maneuvering her out of the room toward the hall.
“Papa, Papa!” she cried hysterically. “Don’t go; please don’t go! You’ll burn out there. You’ll never come back!”
Jaime left. I comforted Joosje and stayed with the kids, but all I really wanted to do was go outside. Eventually I left, too.
“To get water,” I said.
The scene on Madison Avenue reminded me of silent film footage when the Second World War was declared in Europe. People were plainly stunned. Cars were stopped still in the middle of the road with their doors open and the radio on. There were enormous lines at the supermarket. Mobile phones didn’t function, but everyone held on to them for dear life. Everybody was talking to everybody. Pain connects.
ALMOST A HOMECOMING
That autumn after September 11, we are busy applying to schools for Joosje. It is the strangest thing having to sell my four-year-old as deserving entrance into one of the elite private schools. She first has to do an IQ test. Then every school wants to interview her and then Jaime and me separately. Each school has a presentation night. Ten schools, thirty visits. After all those hours spent writing, interviewing, talking, and thinking—if not obsessing—about it, we are convinced that such a school is exactly what Joosje needs. What we need. What everybody in our neighborhood needs.
It is a strange game on a rather uneven playing field. All cards are in the hands of admissions officers, who trade information. Crucial is the first-choice letter, in which you show your cards in a buyer’s market. Jaime and I are traders by profession, and Joosje is a smart kid, so we thought we should keep our options open. I include one Catholic school among our choices because I know a few families there. More as a safety net, I think, not really thinking Jaime will consider it since he is Jewish. We celebrate both Jewish and Christian holidays, but we are not religious otherwise. I went to church as a kid, but my country had rapidly become secularized during my childhood. My generation became cynical, believing religion to be the source of all conflict.
The admissions officer of the Catholic school turns out to be a bit of an overage hippie. Just like Jaime. They immediately hit it off. “Better Christian values than no values,” Jaime jokes during our interview.
“Why don’t you give it a try?” she asks him. “Why don’t you come to the weekly mass, and see if you can live with it?”
I am neutral at that point. If anything, I find the school a bit fussy and too girlish. I truly dislike the uniform with its red-and-white-checked apron resembling a tablecloth. My kid was named one of the coolest dressed at her preschool, and now she would have to dress like a German waitress?
We go to mass around Christmastime. The elegant building, already stunning, is spectacularly and tastefully decorated with wreaths and bows, matching the ones in the hair of the girls.
With Jaime at the Central Park tennis courts, New York, 2000
We sit in the back of the wooden chapel—Jaime comfortably uncomfortable, I uncomfortably comfortable. Then the girls come in. Without their aprons. They look like little angels and sing like them too. The priest seems as broad-minded as could be, almost New Agey. Gently preaching a message of love. A message we so need that winter after September 11. Jaime smiles. I cry. We want this for our child. We both had this as children. How could I have forgotten? How could we not raise her with the idea of something bigger than ourselves?
The first-choice letter went out the next day to the Convent of the Sacred Heart.
WELCOME TO HOLLAND, 2002
We now belong to the special-needs world. With its own junk mail. We get lots of letters showing pictures of children with Down syndrome, in wheelchairs, or with other disabilities. At first I would not open them. Then one day there is a booklet in my mailbox with a colorful picture of tulips on the cover and the words “Welcome to Holland.” I immediately start reading the accompanying article in the elevator to my apartment.
It turns out Emily Perl Kingsley used Holland as a metaphor for the experience of raising a child with a disability. To imagine how raising a child with a disability feels, the author compared having a baby with planning a dream trip to Italy: You imagine the trip in your head a thousand times. You read books. You are full of plans, full of anticipation. But when the plane lands, it becomes clear you have not landed in Italy, but in Holland. The important thing is you have to remember Holland is not a terrible place; it is just different. Of course you’ll have to adjust: learn a new language, read new guidebooks, make new plans. But you will discover some very nice things about Holland, and you will meet new people too. The only problem is that everybody around you only knows Italy. They all tell you how wonderful it is, and for the rest of your life, they will remind you of the fact that Italy was where you were supposed to go in the first place. They cannot appreciate Holland. Nor do they take your appreciation for Holland seriously. The pain of that will never go away. It is even more difficult than the loss of your dream, which in itself is a very, very significant loss. But if you allow yourself to spend your life mourning Italy, you will miss out on the very special and loving world that is Holland.
As it turns out, after all the traveling I had done in my life, I am stuck in Holland.
Reflection: Hope
I read every book on autism I can find. In any language. To understand my son. To get reacquainted with him. His behavior is so out of whack that I need a blueprint to understand him. I have to break into his world so I can find a place for him in mine.
My favorite books are those written by autistics. They give me a glimpse into Maxi’s mind, or what it will become. At first I measure everything he does against “normal,” constantly making comparisons, always trying to minimize his condition, marginalize it. Maxi doesn’t have this, or Maxi doesn’t do that. “At least . . .” Always “at least.” Often my heart is racing while I read these books, because I am nervous to find out about the next hurdle. But I read my way into acceptance. I learn to appreciate how Maxi’s mind works, how he sees the world. By fighting it and focusing on “recovering” him, I am missing what is there, in the here and now, right in front of my eyes. I just have to take my losses. Take a loss on my expectations.
It takes a lot of effort to learn how to look through his behavior, to stop thinking, Oh, autistic with his every move. But at some point I do. Once I learn to take him for who he is, I discover what is there. A beautiful boy with an unique perspective on our world. And a true source of unconditional love. From there, the only way is up. He turns out to be my teacher.
I don’t feel there is a “real” person inside Maxi screaming to get out. Maxi is real. He is someone—not a caged someone. He is a person who is worthy in every sense. He sees the world differently. And I like how he sees it. He wakes up smiling, goes to sleep smiling,
and enjoys the sequence of moments in between.
Have I given up hope? No, I have taken a loss on the expectations I had for his future. Hope is not an expectation. Hope is not wishing life to conform to what you think it should be. It is staying in what is real.
Hope helped me cope during those very hard early years, when I had to accept that for Maxi there was no “recovery.” Not with pills, not with antitoxin treatments, not with listening courses or diets. Maxi endured them all. Sometimes at a great price, and often at the expense of my daughter and my marriage.
I have stopped believing I have control. That is the reality. My hope is rooted in reality. The here and now. I see many possibilities for Maxi, but not in the way I did before. I am looking beyond football teams, prom, or college. I want him to be open to life in all its manifestations. Open to what is real, not to what I want him to be. By really embracing that, I have emerged not only accepting him but also celebrating him.
For me, life is coping with what is. This is what we are given. Maxi could have had a stroke, an accident, or meningitis, after all. Shit happens. Why me? Why us? Why not? I have taken a loss on my expectations, but I have never taken a loss on Maxi. Or on my hope. I do as much as I can, and I will do more when needed. I am living a very hopeful life.
TIME FOR SINGING
Every Thursday morning I go to mass at Joosje’s school. Surprisingly, it becomes the highlight of my week. I drop her off at 8:15, have a coffee with the other parents, and walk back with them, in great spirit, to this beautiful mansion adjacent to Central Park. Our seven- and eight-year-olds will be waiting, already seated in the chapel. Bouncing with anticipation to sit next to us.
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