All the King’s Men: A Young Child’s Journey Through Autism

Prologue

The story begins with a baby, lying in a crib. On the walls of the nursery there are stenciled bears, wearing bow ties and aprons, holding umbrellas and balloons. The baby lies quietly, content to gaze at the mobile, which dangles above him, and to listen to the lullaby music, which plays softly next to his ear. His mother sits in the rocking chair next to the crib, enjoying a luxurious few moments of solitude as she reads a book. In the back of her mind, in some small guilty corner of her consciousness, she thinks she should be playing with her baby. He had been fussy for much of the evening until she finally is able to calm him. Or rather soft music and lying alone in his crib calms him. She thinks this odd and follows her thread of thought to some other ways this infant seems odd. The word “autistic” even crosses her mind, briefly. She dismisses the thought as quickly as it had formed. The saying comes to her mind, “when you hear hoof beats think horses not zebras.” This all happens in the furthest part of her consciousness, while she reads. As she steals a look at her watch, allowing five more minutes for herself, the words to the lullaby float through the small room. Twinkle traveler in the dark, thank you for your tiny spark. We would not see where to go if you did not twinkle so…” She does not know that she has become a traveler in the dark herself, and that not once but many times she will rely on nothing more than a tiny spark to reach the journey’s end.

I am the mother in the rocking chair; the baby in the crib is Max. This story began on that day to our family, and us though I did not write it down until much later. Initially I wrote to keep track of where we were in the darkness. Later I wrote with some hope of bringing friends and family closer to Max, trying to show them what I thought I saw. Sometimes I wrote to focus on the good things happening, meager as they were, to light a candle rather than curse the darkness. Finally I wrote to celebrate the long, difficult, irreplaceable journey of Max becoming who he is.

Max is the first of three children Jim and I will ultimately raise together. Of course they won’t realize until much later that we actually had a life before they existed. I had spent time studying abroad in the Middle East prior to returning to my hometown of Duluth to complete my Bachelor’s Degree in Education. Jim had completed his college career several years earlier. We are the only people I have ever known to meet on a blind date who end up marrying. In our life prior to having children, we enjoyed obedience training our golden retrievers, exercising together, and doing remodeling projects to our older home. The job market for teachers was tight, so I worked with computer programming, a knack I discovered I had during college. Jim had been working for several years as a sales representative for a company, which sold computer equipment to hospitals.

When we decided to have children, our families were thrilled. We were the first of our siblings to reach this milestone, and our parents were eager to become grandparents. My pregnancy with Max held nothing unusual, apart from a ferociously long labor, which I hoped never to repeat. After his birth he was immediately taken from us. The doctor’s did not like his respirations or his heart rhythms. After several hours this seemed to even out, but then a blood test indicated the possibility of infection. He was administered antibiotics intravenously while we waited for the results of the blood cultures. In the meanwhile he looked absolutely, ridiculously healthy. The cultures did not indicate any infection, so the medication was discontinued and we were finally able to end our prolonged hospital stay.

Once home Max continued to thrive. Efforts in breastfeeding were successful, and he hungrily demanded my milk often. At times he would hold his entire body stiffly and arch his back when he was held. But as soon as he latched onto the breast he would relax, and I interpreted his actions as signs of hunger. He had periods of fussiness as all infants do, although his seemed to come with no forewarning. We discovered the swing calmed him, and he was content to sit in it for hours. It wasn’t as though we were too busy to hold him or to play with him. As a stay at home mom, he often had access to my undivided attention. It wasn’t attention he wanted, however, during these fussy times. He wanted to be left alone. At other times he was interactive, laughing and cooing as I sang and played the baby games we had invented for him.

As an older baby, his sleep was extremely difficult to regulate. During our attempt to eliminate the 4 a.m. feeding he persisted in waking for, we inadvertently set his internal clock to begin waking and staying awake at this time each morning. It took until he was nearly 18 months old to get him to sleep later than 5 a.m. But early rising seemed to run in the family, and he was reaching his milestones. He learned to sit and to use his hands, though he preferred being in his walker. The hardwood floors in our home were perfect for motoring around and exploring. He did not play games like “pat a cake” and “how big is the baby” with us, as our neighbor’s child did. But when he began walking independently at 10 months of age, I decided to believe what the child development books said about the broad range of normal. Perhaps he was just intent on his large motor development, and the babbling and talking would come later.

Soon after he could walk he discovered our vacuum cleaner. He was fascinated with its retractable cord and all of the attachment nozzles. I left him in the care of my sister one day when I needed to run to the store. He was so focused on the vacuum that he did not notice my departure or my return. My sister worked in a hospital, and from her office she could often see children coming to receive speech and occupational therapy. Some of Max’s behaviors reminded her of those children. Particularly how he would hold a toy up in front of his face and turn it from side to side as he watched. But he was still only a baby, and he had begun to speak. At least one word, “avu”, which was his version of “vacuum.”

Around the age of 15 months, we thought Max was entering the so called “terrible two’s” a bit ahead of schedule. In unfamiliar settings especially he seemed bent upon his own agenda. We seldom knew what that was though, as he made no effort to point, gesture or in any other way tell us what is was that he wanted. At our family’s cabin in Wisconsin he could often be found opening the homemade screen door and letting it go to watch it slam. Much later, after we knew about Max’s disorder, I look at a video tape of us trying to get Max to put a stick he is carrying into the water to “fish.” In the video he appears to be deaf.

At that time I became pregnant with our second child. During the first few months of pregnancy I was focused upon my own nausea and fatigue, and simply tried to keep Max occupied so I could rest. This seldom was successful, and often we went on outings to the discount store or to one of many fast food restaurants, which have indoor, play areas. I was a first time mom and did not have many connections to other parents. I had believed I was capable of raising children, but I did not know it would be so difficult. I didn’t find out until much later that for other parents it was not.

As the end of my pregnancy neared, my concern for Max’s development was real. The medical professionals whom I asked restated what I had read and heard, that all children develop differently. Max was not yet two years old, I was told. Many children don’t speak until they are nearly three. This answer did little to satisfy me, but before I was able to pursue it further, our second baby was born early in a medical emergency, which threatened both of our lives.

We brought our new baby, Alexander, home from the hospital, thankful that we had all survived the trauma of his birth. Our household, which had been increasingly disrupted by Max’s difficulties, was not nearly as chaotic as I had anticipated. The public health nurse visited to make sure Alexander had indeed suffered no ill effects from the placental abruption I had experienced, which terminated his oxygen supply and caused his heart to stop beating before his emergency birth. During her visit I again inquired about Max. She told me that she would have a speech language pathologist who works for the public school district contact me regarding a screening for Max. Finally, I thought, I would get some answers, or at least an expert opinion to allay my fears. I had no idea of the darkness, which would soon engulf us.

The First Year (1996)

Panic

I am standing at the kitchen sink wondering what to do next. The numbness that has descended over me is profound. Our two year old son may be autistic, but we will have to “wait and see”. In recent weeks we have had Max assessed, reviewed the results, and wrote an educational plan. The professionals tell us that a lot can happen in the next three years, that no one can predict the outcome until he is more developed. What they haven’t said, what he may not do, would make me panic if I weren’t so numb.

I dream that night that Jim and I are on vacation in a warm tropical place. We are swimming together, enjoying one another. Max is with us in the water. I realize that although I am trying to hold Max’s head above the water, he is submerged, drowning. I awake in a panic, my heart racing. How can I enjoy any aspect of my life, feel anything good, when my baby is drowning?

I get out of bed and creep into Max’s room. As I stand over his bed watching him sleep, the numbness that surrounds me like a shell begins to crack. Will he ever speak, understand, and know the joy of belonging in a world that makes sense? My prayers and hopes for this grip my body like a fist. The tears come now in a tidal wave.

Surfacing

The phone rings as we are on our way out the door. It is the first day of the Early Childhood class I had registered Max for before all of this began. Only four weeks before, but now it seems that was in another life. That other life had been coming apart, fraying at the seams under the strain of Max’s increasingly complex and bizarre behavior. Yet there was the semblance that normal was just around the corner, his difficult behavior was just a phase, as were most things in Max’s two short years. We did manage to move out of the difficulties during the years of babyhood and into new uncharted waters. Only recently though had those waters become so deep and so rough. Pregnant with our second child, I could only hold onto the thought that we would pass out of this latest phase of Maxwell’s.

His agitation, his inability to play, his roaming about the house. He couldn’t seem to settle on anything. He did not play. He had a favorite music tape that he liked to listen to, as he stepped on and off of the exercise stepper. I bought the stepper, as it had been so difficult to get him to leave a department store, he was enthralled with the podium the mannequins stood upon. He stepped on and off of the stepper in our living room over and over, all the while listening to his music.

Even as a baby he had a tendency to focus on one thing. For a while it was the infant swing, then the jumper. He learned to walk in his walker long before the rest of his body was ready to go, and was only happy in the walker. He did learn to walk independently quite early, but it was before he learned to crawl or to pull himself up. We would stand him in the room and he would walk until he fell, beached and helpless until we came to his aide.

After this it was the vacuum cleaner. His initial interest in the mechanism soon shifted to a passion for watching me vacuum. At a time when he should have been starting to speak, he was silent but for grunts and screams, which made it quite clear what he wanted. Although the things that he wanted continued to dwindle, until mostly he only demanded from us food and drink. And our expertise at operating the VCR.

We discovered by chance one night that the television program “Wheel of Fortune” captivated his attention and calmed him. So dramatic was its effect that we taped several episodes. He became more and more dependent upon this tape, as an addict depends on his drugs. We could not go anywhere that did not have a VCR. I have a picture in my mind I will carry with me always from those times, of Max wandering about the living room as dusk fell, while Vanna turned letters and the wheel spun. So were our lives spinning out of control with this small, silent, unhappy creature that was our son.

I pause, looking at my watch, and answer the phone. It is Tracy Goman, the speech language pathologist who had initially evaluated Max’s language abilities, or rather lack thereof. It was she who first sounded the alarm, which now rang continually like a siren in my mind. It was she, who met with us in our home to deliver this devastating news, that Max appeared to her and the other persons on the evaluation team to exhibit behaviors suggesting autism. That it wasn’t just a phase that Maxwell would pass out of. His overall test scores indicated that on most levels he was operating as a 9 month old.

Then there were the obvious straws to grasp. Maybe he couldn’t hear. He often did not respond to his own name, or any other words spoken to him. He was, as she said, extremely difficult to engage. I had tried my own experiments in the past weeks, to discover that he responded equally to any words that I said, nonsense or otherwise. Mostly he responded to the tone of my voice, if he responded at all. My golden retriever performed better on these tests than Max did. But he did respond, occasionally. More often it was I who responded, anticipating what he might want or like. I knew he had a connection with me, but how much of that connection was based on my efforts?

At any rate, I couldn’t ignore the other pieces of this puzzle that seemed to be falling into place at a sickening rate. His strong aversion to fur and other textures, his uncanny sense of direction, his passion for the alphabet. He learned all of the upper case and lower case letters prior to his second birthday. I discovered this one day while watching him play with an electronic keyboard game. The setting of the game had been bumped to a quiz, which asked the player to click on a certain letter. Max played the game flawlessly. Yet he didn’t speak one word, note even one speech sound.

She is calling to find out how we are. She is above all a compassionate person, an unfortunate messenger. As I will find out in the coming months, much is known about what autism looks like. Much less is known about how to deal with it. And even less of that help is available. These rough waters I would come to find out are not well charted. But for now, I have not yet surfaced on this ocean of icy water into which we were plunged. I wake every morning as though from some terrible surgery, out of a numbed stupor and into the pain of some trauma my body has endured while I’ve slept. Long before my body is fully out of sleep my mind resonates what I slowly am realizing is true.

I know that your entire world has collapsed, and I’m calling to find out how you are. She must have figured out a way to ask this in some eloquent and professional manner. I remember the tightness of the skin on my face, as though I left a facial mud bath on for too long and my skin had shrunk two sizes smaller than the bones beneath it. I remember the stiff fabric of my jeans, which had only recently replaced the maternity stretch wear of the previous nine months. I remember the sky was clear and blue against the vivid autumn leaves on the trees, which lined our boulevard. I remember thinking, why are you calling me when I am dead?

The Darkest Hour

I read nearly everything I can get my hands on regarding autism. Though much is written, little is truly understood about this disorder. It is a spectrum disorder ranging from mild to severe. Some characteristics that autistic people may share are odd body movements, repetitive behaviors, difficulty learning language, fixations and aversions, and a strong desire for routine and sameness. These differences stem largely from a sensory dysfunction in the area of the brain, which processes external stimuli. In recent years, studies have shown that early intervention can make a huge difference in how the autistic child learns to compensate and function in a world of sensory confusion.

While I read about autism I am wondering, waiting, watching. This is in some ways worse than the initial blind side impact, which the results of Max’s assessment delivered. I see Max smiling at my mom and stacking blocks and am euphoric. The people who evaluated Max did not see this. They saw him at his worst, under stress from the testing, licking the wallpaper and shutting everyone out. I watch his bizarre activities with fascinated horror. He dances on his tippy-toes in front of the television watching the credits for a program roll up the screen. He arches his back away from us when we pick him up, refuses to touch or be touched. He studies road signs, license plates. He picks up the dog dish and drops it, watching it wiggle from side to side until it finally rests upright.

I have taken all of the electronic toys and put them in the closet. Toys with buttons that played electronically manufactured music or voices, which he had listened to repetitively, as intently as he had shut out their human counterparts. I wanted to smash them all, destroy what was before my eyes. He interacts with these machines in lieu of people. Max’s agitation increases without these gadget companions. He begins opening and shutting doors, over and over, as in a frenzy. Times such as these I am convinced that this horrible nightmare is happening to us, that Max is becoming lost to us. This maelstrom of emotions is fueled by what I read. Lifelong disability, severely impaired ability to communicate, non-verbal, detached. The words leap out at me, lash me like a whip. I recognize Max in stories parents have written about autistic children. I have never understood the word heartsick until now.

Both Jim’s and my parents have been rocked by this news. Jim is devastated. I carry out each day, feeding, wiping, diapering and mothering two small children in a family struck by a bombshell. Somehow during this shell shock we have our new baby Alexander baptized. Years later as I look at the pictures from this day I can see, just below the surface of my skin the hysteria rising. I look at Max who does not return my gaze and think, how could this happen when I love you so much?

He wakes from a nap, screaming inconsolably. This is something Max has done since infancy. Many times I brought him to the doctor, insisting there must be some physical ailment to cause such screaming. Of course the screaming had ended in the twenty minutes it would take to get to the doctor’s clinic. On these occasions, the physician patronizingly looked in Max’s ears, felt his belly, and even performed x-rays. These exams found Max to be a picture of physical health. Why does he scream then? Much of my consternation I knew was being dismissed as a first-time mother’s inexperience and micromanagement of the normal fussiness of infancy. One doctor had even diagnosed Max with “late onset colic”, which meant of course that he had no idea what was causing him to scream. We learned to live with this screaming, as we had lived with so many things, not knowing why and with blind hope that it would end.

I console Max on this day with the Weather Channel. In the back of my mind I remember reading a flip comment once, that maybe this world is another planet’s hell. As he becomes absorbed in the maps on the screen, Max calms. I finally know that he is screaming because the world he left upon sleeping is still here when he awakes. With this realization I can no longer wonder if all that has been said about Max is true. In this darkest hour I am screaming too now but no one hears the sound. I have no idea if the dawn will come.

Adrift on the Ocean

The educational plan which was the result of Max’s evaluation consists of various goals we have for Maxwell, broken down into smaller steps of how they are to be achieved. In one section of the plan there is a goal that Max will speak, sign or in some way communicate ten words. My only thought concerning that goal in these dark times is yeah, right. Hope did not abound.

The cynic within me had reason to doubt. While everything that Max was going to do was neatly spelled out on paper, I had yet to see the actions that were to be taken. In these early weeks, one part of my battered heart still reeled in my chest. The other part beat out an urgent staccato. Intensive early intervention. These words appeared in nearly everything I read. This meant more than one hour per week at Early Childhood class.

We begin the long process of medical screening to rule out some etiologic cause for Max’s disturbed behavior. Many of the specialists require referrals from a pediatrician. I bring Max to this initial appointment, spurred by the urgency to do something for him. While I know that this doctor won’t be able to miraculously cure Max, I arrive with the hope that he will at least be a resource for where to get the help we so desperately need. He examines Max, who has been forced to wait in the waiting room and later the exam room for nearly an hour. He is understandably agitated. After the exam is complete, the doctor whom I had pinned my hopes on was only able to tell me that Max was knock-kneed, and that I would probably need the name of a counselor to help our family deal with our grief. I wanted to take his stethoscope and wrap it tightly around his neck. I sensed that he had already given up on Max, after only just meeting him, under difficult circumstances. I don’t need grief counseling, I need help for my child! We left the clinic and walked across the parking lot as huge wet snowflakes fell. They could have been tears on my face. Tears, which I was too tired to cry.

After enduring this doctor’s visit, we receive the necessary referrals for the other specialists Max will see. He sees a child psychologist, who attempts to point out cars on the street below his window. Max is unresponsive to this, and also fails to point at anything the doctor asks him to. I could have told him over the phone that Max does not point. He tells me much of what I already know about autism, while Max humps his blankie on the doctor’s couch and I cringe. I leave thinking I could have saved my parking money for all the good that appointment did.

Next we bring Max to a pediatric neurologist to rule out more obvious causes to his behavior, such as a chromosomal disorder or a brain malformation. An MRI is ordered, along with a series of blood tests. This day is the longest in our ordeal with the medical community. We begin early in the morning at the hospital, where Max is sedated for the MRI. The sedation must cause him to feel the same way he does when he awakes from a nap. He screams and thrashes in the hospital crib. My attempts to hold him only make him react more strongly. I stare sadly at him through the metal bars of the crib. He looks like a caged animal. Finally after a second dose, the sedative causes him to sleep. The procedure is performed without incident, though upon waking Max has another fit of screaming which also includes vomiting up the crackers and pop which were in his stomach.

We bring him to the lab to get samples of his blood to test for chromosomal abnormalities. He screams in terror as several adults hold him down to draw the blood from his vein. I sing the ABC song to him, which at times will calm him. My breasts ache with the need to nurse our baby Alexander. The rest of me aches to give comfort to Maxwell. Neither ache can be remedied at this moment.

We bring a groggy and disoriented Maxwell to the neurologist’s office to interpret the results of the MRI. He has been called to the emergency room where a small child has received a head trauma in a car wreck. As we wait, Max’s disposition deteriorates further. When we finally meet with the neurologist, he confirms that the results of the MRI are normal, as are the blood tests. Of all the professionals we have dealt with, his manner is the most affable. He has seen many levels of functioning with autism, though he offers us no specific resource or intervention for Max. Having just tried to repack a child’s brain into a crushed skull, his manner conveys to us that Max does have a functioning brain to work with. We leave the appointment with the slightest feeling that all may not be lost. From all of the medical appointments and procedures we have endured with Max, this is what we are able to bring away.

I was not at all sure Max is within our reach. I was certain that I could not reach him alone. I must find help. I could not sit idly by, content with the words of Max’s educational plan. I call daycare centers and childcare professionals. I try to explain what Max needs, though I don’t even know that myself. I try to explain what he is like which is almost impossible. I even visit a daycare home, but can’t see Max functioning and learning in its chaos. He hasn’t managed to function well or learn in the quiet of our own home. Each day, each minute ticks away. Some parents I read about on the Internet have people working with their children for forty hours per week or more. I did not know until later that a myriad of therapies and interventions for autism exist, each with their own set of zealous believers and followers. All I knew was the urgency to do something for Max was clear. Exactly what to do, however, was not.

I try to engage Max in something, anything. I tear him away from the Weather Channel to walk outside in the leaves. I pick one up, hold it right in front of his face. His eyes are averted. I walk through the leaves, making them rustle as I go. I try to get Max to do the same, but he doesn’t imitate. He has never imitated us. Short of operating his legs for him, I am not sure how I can get him to now. I stop at the corner and he stops too. Not because I am stopping, but because he sees something. He doesn’t point or babble or let me know in any way what has caught his attention. He never has. Instead I follow his gaze, realizing that is often the way I am able to guess what he is seeing, thinking and feeling. It is a street sign that he has seen. Amid all of the enticing fall colors, sounds and smells, it is the sign that captures his attention. I turn around and tell him “let’s go home.” Not that my words mean anything to him. I take his hand and walk back to our house, knowing we are adrift on this ocean into which we had been plunged. I didn’t know that very soon we would meet the two people who would become our rudder and our compass.

Private Universe

If one defining aspect of autism is aloneness, so did our family feel completely alone. While other parents of small children were dealing with the normal challenges of parenthood, we had been pitched headlong into the surreal. Talking to others during this time was most like a telephone connection gone awry. I could hear what was being said to me, but no one on the other end of the line could hear me. People in our everyday life didn’t seem to understand that Max would not just “grow out of” what we were describing. Worse were the well-meaning informative people who thought they understood and did not. Particularly when people found out some of Max’s unique abilities and pointed out that Einstein did not speak until he was four. People looked at me like I had sprouted a second head when I went into detail about Max. Or even worse, thought they knew what I was talking about. They had no idea.

If we had suddenly been cast into this private universe, we were in the company of many people I met over the phone and Internet. These connections proved to be fortuitous in finding the help we needed for Max. They were also a lifeline for me during that first year. Reading about the child of an e-friend I made who was slightly older than Max was something I came to depend on in the beginning. When our e-mail was accidentally deleted one day I literally burst into tears. I read about her (then) four year old little boy, and the language he was developing, and for the first time felt a glimmer of hope. During the year of our daily correspondence, we shared the struggles and triumphs of our lives, understanding one another as two people seldom do.

I called complete strangers on the telephone, people who might know where to go and what to do to get help for Max. It was from one of these calls that I got the name of the director of a Montessori preschool that had apparently worked with a few children like Max. I didn’t know then that this was the first good thing that had happened to us since we boarded this runaway train.

The second good thing to happen to us came in the form of the extraordinary speech language pathologist who had been assigned to us by the Early Childhood Special Education program. In the ensuing months of struggle, Carol Roberts would give us reason to believe in ourselves and in Max. She would also give us the knowledge and tools to reach him.

Max and I visit Lakeview Montessori soon after my phone call to the director. It is a large older home-turned-preschool. The walls are white, peppered with fingerprints of various sizes. The windows, ceilings and floors are outlined in bright colors. The rooms are filled with low shelves of toys and project materials, inviting children to play, explore and learn. The director, Lynn Newberg, meets Max and I at the door. She had told me over the phone briefly of the other children she had worked with who were like Max. She said how excited she was to meet him.

Max wanders from room to room, stopping to examine a thing or two, which catch his fleeting interest. I follow him, awkwardly mixing neutral chitchat with intimate details of our recently calamitous life. It is hard to ask a complete stranger for help of this magnitude. Max discovers the cupboard doors in the bathroom. Open, shut, open, shut. He takes paper from the shelf and walks to the mirror. He drops it, watches the reflection as it floats to the floor. The questions she asks me show me that she has indeed been to our strange part of the universe.

She shows me the outside play yard, which was designed and built at the time she was working with the first child she knew that was like Max. The sidewalk surrounds an inner play space, which houses swings and climbing equipment. The children could ride their bikes around the perimeter, as this little boy had been inclined to do, around and around and around. She tells me he had liked to watch the wheels of the bike go around, looking over his shoulder as he rode. Beginning with him where he was at and building to where he needed to be, the outside riding track became the drive through of an imaginary McDonald’s. She told me of the day he poured her an imaginary cup of coffee, and she knew that he would make it. I tell her I don’t have that kind of confidence for Max. She tells me that he is so much younger than the other children like him that she has worked with, that she sees so much potential already in just meeting him. She is the first person since we entered this parallel universe to say the words that I so desperately want to hear. I hear her words, but I don’t believe them.

Swiss Cheese

Carol Roberts comes to our home for the first of many visits. She is friendly and articulate, immediately likable. She brings a large inflatable Mr. Potato Head doll and a Lucky Ducks game. The Mr. Potato Head is obviously beyond the scope of Max’s capabilities. He is only able to identify one body part, his nose, and this is sporadically. He does it by sniffing when we say the word “nose.” Putting an entire face together, a felt one at that, with another person is unfathomable. He shows interest in the Lucky Ducks game. It is a noisy and active game, with a mechanical pond that carries the small plastic ducks around and around in a circle. This appeals to Max immensely. He stands next to the game, dancing on his tippy toes, his hands, fingers and arms held stiffly at his sides. Carol says single words to him, over and over, slowly and carefully. “Duck”, “swim,” “quack”. Max soon tires of the game and goes to our pantry, uttering his patented all purpose grunt which means he wants a snack.

While he is eating, Carol talks to me about how to proceed with Max. She tells me of the overall disorganization in Max’s thinking caused by a malfunction in the sensory processing part of his brain. A normally developing brain would know how to filter out what was not essential and glean meaning intuitively from the sights and sounds it processes. Kids like Max don’t filter stimuli and are barraged with so much stimulation that they become overloaded and shut everything out, as a measure of self-preservation. The information that does reach the brain is jumbled and incomplete, snippets that are received between overloads. Our job with Max, she tells me, is to give him simple words and help him organize what he hears by connecting it to what he experiences. This is to be done in positive interactions that we care share and complete.

She describes communication as a circle. I say, you say, I say. Circle complete. Babies intuitively do this when they babble, and parents do it when they respond back to the babbling. In this way babies learn valuable preverbal skills of this circle of communication. In playing with an adult, an older baby will learn another essential component of communication, joint shared attention. This means that both people are focused on the same object and exchanging some type of communication about the object. It is evident in babies who have learned this, as they point to a ball, or a doggie or the moon, looking to show someone what they have seen. Max did not babble or point. We have to bring him back to those stages of his development, to fill in the missing pieces. We must do this deliberately, in a way that Max can process. She describes Max’s current development like Swiss cheese. In order for him to acquire a complete system of communication, we must go back and fill in the missing pieces.

Part of me is tremendously relieved to have this person in my living room telling me exactly what we need to do to help Max. Over the months and years that follow I would only become more awed and grateful to Carol. I didn’t know that on that day that she had just begun to help us find the keys to Max who would give us back our lives. I must have looked like a deer in the headlights. Her words were indeed reaching my rather ordinary brain. Now I felt overwhelmed by the responsibility we had to Max.

She looks at Max, as she is getting ready to leave. She tells me how much he reminds her of another child she has been working with. She tells me it is in his eyes, she can see so much communication intent, so much intelligence. She tells me that this other child, a little girl two years older than Max, has become quite a chatter box. Max, chatter box? I’ve never even heard a sound come out of him that is not a grunt or a scream. But here is a person in my living room telling me how we will get Max to speak. And believing that he will. She has no idea, even now, how long I clung to her words.

Bridge Making

It hardly seemed that a matter of weeks ago I had only a casual knowledge of autism. Between the books I had read, people and articles I had discovered on the Internet, and now Lynn and Carol, I had a decent idea of where to start. My initial reaction to stamp out everything that seemed autistic in Max was not far off. Only now, with help and support I knew there was a kinder and gentler approach. I only see this now, looking back. At the time I was still groping in the dark. I was not nearly as competent, the story not as cohesive as it was being carried out as it is written down here. Indeed I recall with shame a few incidents, which happened shortly after Carol’s first visit.

In the ensuing weeks after we began working with Lynn and Carol, Max began to make some speech sounds. Of course these were not performed upon request. These isolated sounds appeared in the strangest of manners. For a while it was the “b” sound that we heard as Max carried on with whatever he was doing. “Ba ba ba ba” he would walk around the house repeating. Then it was the “m” sound. Then the “w” sound. We wouldn’t know until later that Max’s sensory issues made oral motor tasks required for making speech sounds difficult. He learned to speak literally one sound at a time. But for these sporadic sounds he still remained largely silent, apart from his grunts and screeches. Yet I knew he could make the sounds required for simple baby talk and word approximations. I did not know how difficult it was for him, especially under the pressure of a demand.

It is a small ritual of Max’s to take a drink of water while I rock him in the rocking chair before he naps. Rocking Max is not rocking in the conventional sense of the word. He sits with his back against my body facing out, not conforming to me. Likewise when we carry him, it involves the least amount of physical contact while still supporting his weight. On this day I deliberately forget to get the cup of water for him to drink. He grunts, I know, to indicate that he wants me to get the water. Over and over I say the word for him, slowly and clearly. I have heard him make the “w” sound before. I hold his face in front of mine, exaggerating this one word, one sound that is required of him. He begins to get upset, whining, struggling to get away. I persist until he is nearly in hysterics. I finally give up. He has not uttered the sound.

In order to learn from us he has to play, and in order for him to play he has to learn to use toys. At that time he could stack blocks, do the shape sorter, and put pieces in a very simple puzzle. After I had purged our home of all of the electronic toys, I had spent some time in toy stores trying to find anything that would capture Max’s interest. These included play dough cookie cutters in the shape of the letters of the alphabet, a puzzle of road signs, a car with doors that open and shut, and a pegboard.

Alone in the house with Max and our colicky three month old baby Alexander, I am surprised now that I did not have more incidents of craziness than I did. On one such occasion Max is wandering aimlessly in our playroom. Something within me snaps for a moment. Here is Max surrounded by toys, without a clue as to how to play with them. Not only did he not know how, he had no desire and resisted any of our efforts to engage him. I take him and sit him down between my own legs, holding a toy hammer from a play workbench in his hand with mine over it. I hit, again and again, at the plastic nails that are set up on the bench, vicious and violent. We are both screaming and crying. It is far from my finest hour.

Something that Carol tries is sign language. Initially the thought is, because Max is such a visual learner that perhaps the sign for a word would be easier for him to hold onto. The auditory word is so fleeting. I realize another benefit to this approach soon after trying it. As a parent educator I know once said of young children in general, “you can’t make them sleep, you can’t make them eat and you can’t make them void.” As I discovered, neither can you make them speak. I could, however, make Max sign. If only by putting my hands on his hands and manipulating them to form the sign, I could make it a requirement in his life. More than anything, I would realize later, this conveyed to Max that communication was essential. Not just in the way he had always communicated, through grunts and cries. But according to some universal system that was not of his choosing. I did not realize at the time the importance of this development, and how much it would impact his success.

While during these early months of work with Max I occasionally crossed some invisible line between intrusive and invasive, the general idea was there. We would replace non-functional behavior with purposeful play, take his limited capability to communicate and expand it. Capitalize on his interests and develop them. We would become bridge makers.

The Human Race

The early weeks that stretched into months while we were working from ground zero were not easy, to say the least. Everywhere we turned there were behaviors we hoped to erase. His interest in participating in our activities ranged from indifference to absolute resistance. The best we could hope for in those early days was to not endure too much angst during the day. He initiated nothing and reciprocated nothing. This was particularly true for Jim, whom he rarely acknowledged. In the face of this we had to remain upbeat, making interpersonal interaction something positive, enticing. Something worth the effort which it would require from Max. It was very difficult to not personalize Max’s disorder and feel rejected.

One morning brings these feelings to a head as Jim leaves for work. We make a production out of comings and goings, requiring Max to acknowledge in some way the people in his life. It is a more difficult morning, as mornings go. Our attempts to get Max to look or wave are drawn out and unsuccessful. Finally Jim walks out in disgust, saying something like “why bother.” He drives away, leaving me feeling like I am the only one in the world who is left to help Max. Of course this is not true, but during those first long months of this story the rebuff was real and painful.

Another thing we addressed in the early mornings of those months was table etiquette. Many of the authors I had read regarding autism cited that autistic people often did not learn to use silverware. I don’t know, even now, if this is true. I do know however that I was hell bent on getting Max to use silverware. I think this was a knee jerk reaction, another way I was trying to stamp out anything I saw in him that could be autistic.

Although I had always provided Max with silverware at his place setting, I had never demanded that he use it. Like many other things we would come to demand of Max, most of the parenting books I had read recommended a low key approach rather than a power struggle to situations such as table manners. For several weeks during these early winter months, either Jim or I would sit by Max and be the silverware police. Beginning with him hand-over-hand to show him how we expected him to use the spoon, we would replace it in his hand and require he use it whenever he put it down and reverted to his hands. On particularly cranky mornings this would do little to set the tone for the day. But I was finding within myself, as was Max, a force of will even greater than his own. It was only a matter of weeks before the spoon was second nature, and even Max seemed relieved when encountering wild rice soup or applesauce.

In other ways we were also finding keys to managing the unmanageable in Max. And much more was unmanageable as we increased our expectations. Not only in how he spent his time and whether he interacted, but also in the small day to day functions of life which I had formerly performed for him.

Coming in from outside one night, I demand that Max sit down and remove his own shoes. He does not like to touch things like shoes, as they may get his hands wet or dirty. Many times over the past weeks I have sat down with him and put my hands on his hands, showing him where to grasp on the heel, how to pull the shoes off. He has resisted my teachings, as he has resisted many of our demands. On this night I once again say the words “Sit, shoes off” and guide him to sit down. Receptively he understands my simple utterances. I have recently written down nearly 20 words I am quite certain he understands. Among them of course is “candy”. Feeling tired already before the battle has even begun, I ask him offhand “want candy?” He grunts what I have come to learn by his tone is an affirmative, and looks at the cupboard where I store the treats. I tell him “first shoes off then candy.” He considers my offer, removes his shoes, and looks expectantly for the candy. And while I feel shanghaied for needing a bribe to get him to remove his own shoes, I am also thrilled with what I have discovered. The idea of “first . . . then” is something huge that we have not taught him. In these long drawn out months of groundwork with Max, “first . . . then” makes getting him to understand and comply with the expectations we have for him possible.

Another thing we struggle with during these long early months is how we will allow Max to cope. While I did not think it possible, his agitation had increased in the months after his evaluation was complete. This I am sure was the combined result of removing and attempting to eliminate non-functional activities and behaviors which had in the past served to calm him, along with raising our expectations and putting him in situations for which he would need calming. We had taken the Wheel of Fortune tape away soon after our work with Max began, and tried to replace it with something more appropriate. This decision of course was not met with acceptance. The first video Max watches apart from Wheel of Fortune is a Sesame Street video called “Do the Alphabet.” Initially I have to fast-forward it past the opening dialogue to a segment where Big Bird sings the theme song while the words to the song flash on the screen. Even so, the only way I can get Max to watch is to physically hold him, sitting with him on the floor while he cries. Scenes such as this are what I cannot begin to describe to the parents of so-called “normal developing children.”

I know that to continue with the Wheel of Fortune would sanction something purposeless, something I wanted to avoid at all costs. And yet Max did indeed need a way to cope in those months with a world we were forcing upon him, one that he had so effectively tuned out and avoided until now. It wasn’t too long before this “Do the Alphabet” video would absorb his interest completely and thoroughly. On days, which we could joke, which were few, we would tease Max that the house was burning down while he was watching the show. Of course he did not understand our words, but even had he I am sure he would not have looked away from the TV set. At least a Sesame Street video would give him something in common with other children, and the opportunity to build upon this interest existed with other videos and perhaps eventually the actual television program. This had already become the way of my thinking. Where can this go, what can it become? For with Max, we were always planning where we were going.

Our demands were many. Anything that I had read that autistic children did not do I demanded that Max did. Even if in the beginning it was contrived, I could not help but think that this was how he would learn. This was true of pointing, which Max had never done. This was surprisingly easy, so adept had I become at anticipating what he wanted and guessing what interested him. When he grunted for crackers or milk I would physically arrange his fingers so that his index finger pointed while the other fingers tucked in. It seemed ridiculous that I should have to manipulate his hand into such a basic shape, but I did. I called it his “pointing hand”, and would tell him “use pointing hand” when he made a demand. If he did not follow through I would physically do it for him, complete with extending the arm towards the desired object. He caught onto the idea rather quickly to get things that he wanted.

Getting him to participate in showing just for the sake of showing was more difficult. Calling Max’s attention to anything not within immediate reach was difficult. The further the physical proximity, the less likely it was I could get him to notice. Getting him to increase the range in which I could point things out for him was a longer process. I would touch his nose with my pointing finger, then move my finger so his eyes would track it to the object I was trying to point out. His eyesight was never in question. It was the meaning of pointing all together, which had passed Max by. He eventually came to understand this form of communication. Getting him to use it was another step in this process. If I caught him looking at something I would use his hand to point for him, and name what he was looking at. Just as the sign language was teaching him that communication was required, so did my contrived efforts teach him that showing was also something that people did with one another. As much as possible, for each minute of each day we pulled, prodded, enticed and coerced Max to join the human race.

Holding My Breath

As intense as our efforts at reshaping Max’s behaviors were, they paled in comparison to the efforts that were involved in getting him to speak. At the age of two, Max had absolutely no volitional speech sounds. He would occasionally utter a consonant sound, but he was not able to do this on demand. We didn’t realize until much later how much his difficulty producing speech sounds would complicate Max’s language acquisition process.

Most people have an overall accurate perception of their body in space without any visual cues. This is how we learn to play the piano or type without looking at our hands. It is also how we master most of our motor skills. When these perceptions are incomplete, the subsequent motor development is compromised. Max’s oral motor development was inhibited by these “body in space”, or proprioceptive difficulties. Along with these sensory issues, he also appeared to be affected by verbal apraxia. This meant that although his brain knew the signals to send to the muscles involved in producing speech sounds, the signals often were disrupted and did not make it their destination. For us it meant that we needed to find a way to help Max connect himself with his mouth, and connect his mouth to his brain. Add to this that he did not have an innate ability, or even desire for language, and the rather bleak picture of where we began with Max’s communication skills is complete.

Carol visits our home weekly to work with Max. She also works with him at Lakeview Montessori. On paper I have the luxury of dissecting the process of how Max acquired language. At the time it was happening though, we worked off of hunches, observations and much of Carol’s gold plaited intuition. From the beginning she was determined to teach Max language in the most natural progression possible. This meant with peers and in our home, trying to develop the entire communication system rather than isolating and fragmenting it, all while engaging Max in spontaneous play. Far from easy to begin with, this approach was particularly challenging with Max because of the myriad of issues we faced with him. Even Carol, whom I consider a master, would occasionally stand back and scratch her head, wondering how to proceed.

On one particular visit she is down on all fours playing peek-a-boo with Max, who is hiding behind the kitchen cupboards. Max willingly participates in games such as these, which require little from him apart from his anticipation of the word “boo”. But as Carol’s expectations increase, so does Max’s tendency to flee the situation. We resort to sitting him at the table in the booster seat he eats in. When pushed up to the table he is unable to escape its confinement. From this vantage, Carol does a paint with water picture with Max. She attempts to play with a toy tree house with him, using words such as “up” and “down”. He shows only a faint glimmer of interest, and then resorts to whining and struggling to get down. In subsequent visits, his tendency to flee only increases. He senses the expectations she has for him. She finally must resort to playing with him in our small bathroom, where she situates herself to block the doorway, his only escape. They accomplish more in our bathroom on this day than they have in the previous weeks combined. Of course he has yet to utter a sound, but unable to escape he reluctantly attends.

Given her success in our bathroom-turned-therapy room, Carol suggests we relocate our in home therapy sessions to the speech clinic which she directs. In the months that follow I am able to observe Carol behind the one-way mirror of the speech clinic, learning to imitate what she does during her forty-five minute sessions. In this way, though I am far from expert, Max is able to get speech therapy in some form or another during most of his waking hours.

Though the therapy room inhibits Max’s ability for flight, it presents its’ own set of challenges. Primarily, it is the mirrors that line the walls of the therapy room, which are so completely distracting to Max. When Carol covers the mirrors over with paper or other camouflage, the situation improves slightly. As weeks, then months pass, Carol continues trying to engage Max. Much of this involves toys of no interest to Max, with which she pairs something that might capture his attention. A tent with bubbles to blow, a mini trampoline, and many many many balloons. Most of the toys require from Max some sort of utterance in order for him to get the desired response. This is particularly true of the bubbles and balloons.

By this time Max has acquired the sign for “more.” In watching Carol I have tried to set up as many situations in our daily life as possible in which Max must communicate. When I pour him milk, I only pour him an ounce or two, and demand he ask for more. Likewise with food. In the games he has learned to enjoy with us, mostly involving chase and tickle, I will stop suddenly, while he really wants to play, and require him to say to me more.

On this particular day, Carol is blowing up a balloon for Max, and then playing a “ready, set, go” game with Max. She begins with “ready, set, blow” to fill the balloon, then moves to “ready, set, go” when she releases it. It is one of Max’s favorite games he and Carol share. He has learned that she often keeps balloons in her pockets, and today he has searched her for them. After each round of the game, Carol waits while Max hesitates slightly and remembers to ask (in sign) for more. Ready, set, blow. Carol pauses between each word, building up the anticipation. Balloon and bubbles, she has explained, are excellent ways to get Max to regard her mouth as she is saying the words to describe her action.

He has taken the limp, deflated balloon, which he locates behind a small chair, and now he thrusts it in her hand. She looks at him, feigning ignorance. He is in her face now, as she continues to look puzzled. He remembers what is required, makes the sign for more. Carol takes the balloon from him, and lifts it to her lips. Ready . . . his excitement builds. Set . . . he can barely contain himself. She takes a breath, purses her lips together, sets her mouth as though she is about to say blow. She hesitates in this posture as Max, beside himself now, blurts out “beh”. It is the first time he has ever spoken. Carol immediately rewards his request. Then she releases the air-filled balloon, which careens through the therapy room amid her hugs and praise.

It has taken four months of nearly constant work to get Max to utter this one sound, a word that he uses to ask another person to act. From behind the glass I exhale, not realizing until then that I have been holding my breath.

Magic Bullet

It is impossible to relate in this story how very much in the dark we felt. For it is the nature of a story to have a beginning, middle and an end, and writing it down I can now relate it as such. While it was happening, it was not nearly as precise.

While we had adopted Carol’s method’s, I continued to read about and discuss online various approaches and methods of intervention for children with autism. I would quickly come to realize that it is an emotionally charged arena with dozens of programs which all claim to be the way to help those with autism. Finding the approach that worked for our family weighed heavily upon me. Without a definitive way to determine which interventions worked at all, and which interventions would work with Max, I felt myself a reluctant player in a high stakes gambling game.

Two of the methods I read about seemed to prevail as the most hopeful and promising approaches. Applied Behavior Analysis, or ABA as it is commonly called, involves a formal approach of discreet trials which break down and document the acquisition of skills from the most basic (i.e. eye contact) to more complex (i.e. using pronouns correctly). Drills are performed in a structured, at the table manner. The child is rewarded with bits of food or some other pleasing thing. While I had some objections to the methods involved in teaching, I was open to the idea, if it was as I had read the only proven method to achieve success with autistic children.

Starting an “in-home” program, as proponents of ABA call it, proved daunting. I had no idea where to locate the several therapists and associates who would supposedly conduct this program in our home. I had no idea how this would impact our family life, if we would even still have a family life. I had no idea how I would fund this endeavor. Nor had I any clear guarantees that it would be successful. I spent several weeks worrying and hedging. I even went as far as contacting a school in the private sector located in Minneapolis, about 180 miles from our home which reportedly provided these services, for a fee. Finally I came to the decision, in my own mind, that this was not right for our family or for Max. In the end this was the right decision, although it was agonizing at the time. For we were not yet even to the middle of this story, and certainly nowhere near its end.

Another intervention, which seemed to show promise, was a diet, which completely eliminated all wheat protein and dairy protein. While this seemed overwhelming, I knew that it was possible. The literature that I read reported that even the smallest amounts of these molecules could affect the brain’s neurochemistry, and that it could take months of being free from these substances for the body to completely purge itself of them. Though I had my doubts, I felt that a six or eight month trial of strictly adhering to this diet would prove if it was useful to Max. I religiously monitored every molecule of food that went into Max’s mouth, not wanting to dismiss a possibly helpful intervention because I was not vigilant. I learned to make all types of gluten free baked goods, and how to substitute all manners of animal, vegetable and mineral to replace any semblance of dairy in our diets. On good days it was a mild inconvenience. On bad days I wondered what else I could add to my life the further complicate it. We completely and strictly eliminated gluten (wheat protein) and casein (milk protein) for fourteen months. And while we saw enormous progress during those months, in an experiment to prove the diet’s effectiveness, we saw Max continue to progress at a remarkable rate even after we returned to more normal eating.

So, not as concisely as I write here, we find what works for Max. It is not a magic bullet. It is an approach tailored to him and to our family, using some of the principles found in the ABA method, and many of the methods of building communication, which Carol uses and teaches us. We slowly build within Max what is missing and replace what is faulty. He begins signing words to us. Water, more, video, peanut butter. Deep down I don’t know if I ever truly believed he would communicate. I should be elated, but I am not. He understands two or possibly three dozen words. He uses perhaps a half dozen signs. He has spoken one sound. I think of all that is before us. No longer adrift now, I can only envision the miles of ocean on all sides, with no shore in sight.

Sleeping Giant

These are the months of work with Max which I will remember always as the longest, the most bleak. Perhaps the earth really is flat, and one day we will simply plunge off of the edge, into some other cosmos. More likely, the earth is round and we are doomed to circle it alone, again and again. It is hard to keep any perspective when I am shouting down a well.

Continuing on the course Carol has plotted, we are seeing more volitional speech sounds from Max. He enters a period of babbling, which he skipped altogether in his babyhood. Without performance pressure, he is much more free in his experimentation with sound. I awake one morning on an overnight trip we have taken. Both children are in their makeshift hotel beds, all of us sleeping in the same room. I lie quietly and listen to Max as he practices the sounds he has so recently learned to make. “Bah bah”, “dah dah”, “ma ma”, “wah wah,” I listen to the sounds. The lay speech clinician in me notes that they are all sounds produced in the front of the mouth - the easiest to articulate. The mother in me devours the delicious sound of this babbling baby.

He still struggles with making the correct sounds in the context of true communication. Carol has explained to me that most of us are able to “file” the sounds, words and ideas that make up our language into a logical system. This allows us to quickly retrieve the complex sequence of actions necessary to communicate. Kids like Max, she has explained, do not have such a “filing system” in place. He will need practice and our help in organizing, for him to create a functional system of language. This begins with something as simple as learning to produce the “bah” sound to tell someone “good bye.” All of the other nuances, such as body language and eye contact, would also have to be learned. No one realizes what a giant our brains must house in order to communicate with one another. No one except those of us trying to reach it.

During these long months trying to wake the sleeping giant, Lynn’s optimism cannot be quelled. She is optimistic by nature; she must be to be so successful in working with small children. Only in this case I am sure that she is wrong. She senses this; I am sure, as I drop Max off one day. It would be impossible for her not to sense it, and in case she doesn’t I tell her outright. She works with preschoolers. She is used to being told she is wrong, and doesn’t take it personally. I return to pick Max up a few hours later, my spirits not much improved. Max is occupied with something in the room. He looks up and sees me in the door, comes over to me excitedly on tippy toes, arms rigid at his sides. With effort only I know it takes for him, he looks at me and says “mama.” While I stoop to hug his rigid body, tears well up in my eyes. I look up to see Lynn, who is also crying. It is the first time Max has ever called me anything.

After our emotional reunion, Lynn tells me she has someone she would like me to meet. I walk over to the table and see a little boy about 6 years old. “Kieran, this is Max’s mom,” Lynn tells him. “Hi,” he says. Lynn goes on to tell me that she and Kier were discussing how many Rice Crispy treats they would need to give one to each member of his family. “If we have one for Selka, and Lian, and mom and dad and Kieran, we need . . .” he pauses, mentally counts, “ . . . five!” This is Kieran, the child who Lynn told me was like Max, only older, when she met him. Max meeting me at the door and calling me “mama” allows me to believe, at least at that moment, that anything, even what I see in Kieran, is possible.

Face to Face

Christmas has come and gone, a fact for which I am grateful. Times such as these, which should be full of wonder and excitement for Max, make me feel melancholy and alone. Max hasn’t a clue about Santa Claus, and toys to him are still only objects, which we demand he use, like silverware and the toothbrush. He copes with the stress of holiday activities by repeatedly watching a Sesame Street video, Elmo Saves Christmas. At least it is not Do the Alphabet anymore.

We attend church without the children most of the Sundays during Advent. Max is completely unable to sit; the aisle beckons him like a runway. Singing continues to cause him to cry. Not a scream of rage, which I could probably handle. Instead he sobs quietly, real tears streaming down his face as he holds his hands to his ears. During these times he allows me to hold him, if a bit awkwardly, to comfort him.

One of the last Sundays during Advent we sit behind a family, which I have casually met. They have a daughter who is nearly the same age as Max. I remember when they both were babies, how her mother and I would walk together at the back of the church when the babies fussed. The little girl has grown restless during the service and is playing with her father as he holds her. She kisses, hugs and tweaks him. The father plays with her absently as he directs most of his attention to the church service. I am a voyeur, watching this intimacy between parent and child. I am sad that it is not me. As music fills the sanctuary, I lower my face, my eyes awash with tears. In this season of gifts and giving, I realize I have never truly wanted something until now.

So with more relief than festivity the holidays end. The work we do with Max during the cold months of winter-after-Christmas seems much like the months themselves. The days are short, darkness comes early, and we work to keep the cold at bay. Living in Minnesota, sometimes it is all we can do to simply get through these months. Meanwhile, though the landscape outside seems eternally frozen and unchanging, Max is slowly inching ahead.

He uses his signs more spontaneously, although he will often sign a few different ones, until he hits upon the one he needs. He signs “water” to me one day when I am leaving him at his Early Childhood class, then he correctly signs “good bye.” I think of Carol’s filing analogy, how perfectly this is demonstrated. He also begins trying to speak the words he knows, rather than sign them. This is an arduous process, which begins with only the shaping of his mouth, almost imperceptibly. But I see it and I praise his efforts. Yes, yes, that’s it! He knows he is pleasing me, which pleases him. As I look back I see that Max learned three key aspects of communication, which much of his later success was founded upon. Language is required, people communicate to share thoughts, ideas and feelings, and pleasing others is rewarding.

Each small step he takes in the process of becoming verbal is just that - a small step. From only shaping his mouth, he moves to whispering the sounds, to finally articulating them with his voice. He has developed enough speech sounds alone and in combination with one another to abandon his signing. I note in a journal I keep that he speaks 54 words. This does not include the names of all of the letters and numbers.

We continually push Max out of his comfort zone. Lynn is particularly good at not changing the world to meet Max’s expectations. In her thirteen years of exposure to tantrums, she has built up immunity. I envy her this as I attempt to emulate her calm facade in the face of irrational outbursts. Riding upon the waves of irrationality and allowing them to break over her as they may is a specialty of hers. Most of the people she deals with are three and four years old. “That’s the way the world works,” she will tell not only Max, but also all of the children. If Carol showed us how to find the keys to unlock Max’s communication system, Lynn showed us how to teach Max to cope. Practice. This is not to say she was heartless, although to ask any of her pupils on any given day may elicit a different response. But she did Max no disservice by allowing the world to act as it would without special consideration for Maxwell.

I learn from Carol and from Lynn to always raise the bar. I keep pushing in spite of Max’s objections. He has always reacted adversely to any of our attempts to sing or to read to him. This has been troublesome to me, as much of early language development occurs through these activities. And while at times our family quite stoically follows Max’s “no singing” rule, we periodically sing and act out finger plays until this drives him from the room screaming. One night, however, instead of the anticipated screams he takes interest, even allows me to put my hands over his own and teach him the motions. Open them, shut them, open them, shut them, give a little clap clap clap. Initially we must face the same direction, as this is how he has learned the song. Finally though he does learn to regard the person he is doing the song with, face to face.

I try reading books again, which typically has resulted in the same screaming that songs did. I read a counting book with him. One is for a quiet walk, two is for a quiet talk. I read it once, twice, then three times. His excitement builds each time, as he is realizing the words on the page stay the same with each reading. Here is something, I see him thinking, that I can understand. We read it one or two more times, and as I pause for him to process the words, he anticipates and says what I should be saying. He has memorized what he has heard.

Books become his passion, even books without a counting theme. His reading replaces some most annoying activities, such as banging the doors open and shut. I stumble on this replacement accidentally when, with frazzled nerves I suggest he look at books instead of banging the door. I didn’t seriously think he would take me up on it. He has abandoned the doors as though they never existed. Our Goodnight Moon is a bit worse for the wear though. After all these months living with the door banging, I guess I should just be glad that some things happen easily for no reason at all.

In the Trenches

At the time of Max’s assessment, his motor skills were noted as a relative strength. The more I read, the more convinced I was that Max’s sensory processing difficulties would indeed impact his overall motor development. It was only a matter of time. I brought up this concern during one of Max’s educational meetings, and a more thorough evaluation of his motor development was performed.

The results of this evaluation indicated that his sensory issues were indeed impacting Max's motor development. To the casual observer, Max had no noticeable mobility and motility difficulties. But the quality of his motor movements was affected. He had an overall trunk weakness, which would hinder the refinement of his motor skills. While we had never noticed, he had difficulty sitting without leaning on one of his hands for support. This prevented him from using both hands together. Important brain development and hand eye coordination could not happen until these motor issues were addressed.

The final person to join us in the “trenches” with Max was Bev Anderson, a gifted and patient COTA (Certified Occupational Therapist Assistant) who had Max performing tasks I would not have imagined he would do. Her work with him began at Lakeview Montessori, so the first time I watched her work with Max was in our home, about six weeks after she began.

With the bathroom therapy incident still fresh in my mind, I was a bit skeptical that Max would cooperate with her in our home. At least it would afford me the opportunity to meet her and to find out what she would be doing with Max. I knew myself well enough (and later confessed to her) that as involved as I was in the rest of Max’s development, when it came to beads, magnetic fish games, and anything else which required Max to perform small motor tasks I was at a loss. More than that, within 30 seconds of working on these tasks I wanted to throttle him. He sensed this, I’m sure, so I had avoided these activities, for both of our sakes.

We sit on the floor together, my body blocking the exit to the room. I had cleaned the bathroom, but was hoping we would not have to fall back to this contingency. I watch Bev do floor work with Max, little games designed to require both hands so that he can’t lean. This is how she will help him develop the trunk strength, without which they can’t proceed. Max gets tired after only a minute or two. She manages to keep him going.

When he has forgotten about leaning for a moment, he attempts to do some of the snap together toys she has in her bag. He performs tasks such as this as though he is wearing mittens. The strength and dexterity of his hands are severely lacking. Yet she manages somehow to keep him working. She pushes him just beyond the point where he will go. Even to this day I am not sure how she has gotten him to do the things he has done. More than this, she is another person who believed he could do what to me looked impossible. Although in the end, he surprises even her.

Windows

Jim and I are eating dinner one night, talking, not paying much attention to the children. Meanwhile Max quietly eats a hole in the middle of his slice of bread. During a pause in our conversation he catches my attention, then holds up the bread, peeks through his window and says, “boo!” At another meal it is obvious Max is trying to communicate something for which he has no words. It is not food he wants, at least nothing on the table. As he persists we are at a loss. None of our guesses are right. Finally he leans over to Jim and lifts his hand up. Jim allows his arm to be manipulated until it is in the air. Max hits his hand, then moves it, and hits it again. We realize all at once that Max is playing “give me five!” Jim says the words and does the actions to their small game. Max looks pleased with the game, but more pleased I think that he was able to convey what he wanted.

We have a play kitchen set in Max’s room, which becomes the focus of some of our evening activities. Pretending is something we will practice with Max often, as it is essential to most forms of play. We begin with props that closely resemble their real life counterparts, such as play food and dishes. We prepare, serve and eat our plastic food and Max eventually makes the leap. He is observed at his Early Childhood class putting a baby doll in the highchair. At Lakeview Montessori Lynn watches as he and another child stand opposite one another at a play “pass through” type kitchen. The other little boy pours coffee while Max stirs eggs. It is a brief encounter, but one that gives us hope.

He still has a tendency to get “stuck” on certain things. While playing kitchen with Carol at the speech clinic, it is a pretend pickle that is a part of the food set they play with. There are pickles on one of the Barney videos that he has graduated to watching. When Carol incorporates it into their play he is hooked. Though she tries to create interesting dialogue, he keeps returning to the pickle. At home our dialogue does not contain pickles, but it is rather sterile as well. It has been years since I attended a tea party, and the hostess in me is a bit rusty. Our other guest, baby Alexander is a bit like a wrecking ball at this age, which makes for a more than lively luncheon.

All of our talk about food inspires Max to attempt to negotiate a snack before bed. He goes through the whole litany of different foods he would like to have. Cookie? Crispy? Candy? Nina (banana)? He knows he won’t get any of them, but he doesn’t cry when we say no. He just comes up with something else. Finally we settle on a drink of water. On this particular occasion he raises no objection, which often he will, yelling “Mama Mama, na na na na!!” Later he learns to articulate “no!” He has yet to learn to answer an affirmative. Most of what he responds to is “do you want” type questions, for now at least. And while most parents dread the beginning of this “no to everything” phase, I welcome it. I would much rather be confronted than ignored.

Max discovers painting. Months ago, when I was scouring toy stores to find activities to engage Max, I purchased paint. Of course he resisted, as he resisted most things in the beginning. He warily approaches the art table at his Early Childhood class. The theme of the day is fish, and there are actually some live fish at the water table. Once he is certain that the art project consists only of paper and paint, he readily agrees to sit down and try it. As I leave him he is painting enthusiastically. “Bye, see ya” he tells me, without looking up. Of course he eats some paint.

He is participating in his Early Childhood class more. The group times are still difficult. He does not have the language necessary to understand and follow along. Occasionally he will sit with the group for an activity with ropes, rhythm sticks or some other novel object. He even tolerates the physical contact required for Ring Around the Rosy, which becomes a favorite game he, Jim and I play at home. This I’m sure is a curious sight to any of our neighbors who can see in our windows.

Jim plays a game with the boys, pushing the stroller hard and letting go, then running to catch up saying “I’m gonna get you!” We have adopted Carol’s ready, set, go method for getting Max to anticipate and label actions. The lead-in to this get-you game is ready, set, go fast! We also apply this phrase before pushing him around on a small plastic merry-go-round we have purchased. He says these words, and begins putting other words together. What we don’t realize until later is that he is memorizing all of our phrases. It will be nearly a year before he understands the meaning of many of the words he is saying.

Our visits to Carol’s speech clinic continue. Max enjoys these visits, and has a genuine and obvious affection for Carol. He also enjoys the University where the speech clinic is located. In particular there is a balcony, which overlooks a large triangular area of the level of the building below. Max enjoys being held up at this ledge and looking down on the people below. I think he enjoys the altered visual perspective this vantage point offers. I point out the people and objects below, attach language to the activity, as I try to attach language to most things in Max’s life.

One night as I am tucking Max into bed I am telling him of our plans for the next day. Though his language is new and limited to the present, I am hoping that enough exposure to the idea of the future will help him with the concept when the time comes. I speak in short simple sentences about waking when it is light, eating breakfast and playing with Carol at UMD. Perhaps if Carol’s clinic had been located at a school with a real name, and not only letters, Max would not have listened as well. For whatever reason I see him processing my words. He thinks for a moment, and then asks “pe-po?” I understand almost immediately that he is asking if we will stop at the triangle overlook to see the people below. “Yes,” I tell him “we will see the people.”

These are the glimpses we catch of Max. He is behind the glass, looking out as us. We can see him and hear him; we know he is there. More than ever I want him here with us. I don’t want to watch him through the window anymore.

Awakening

When we first brought Alexander home from the hospital, Max would cry inconsolably whenever Alexander cried. Thankfully this did not last long, as Alexander was a terribly colicky infant. I discovered that to soothe the colic Alexander liked white noise. I ran the hairdryer non-stop for hours at a time in his room, while he slept in the crib. When he was out of his crib I would run the exhaust fan above the stove. For some reason Max had no objection to the hairdryer, but disliked the exhaust fan. On some days I would have to choose who I would like to hear screaming. I am surprised that I retained any of my sanity.

Max’s first bonafide encounter with Alexander came after the colic had ended, for up until then he was merely the screaming bundle that accompanied various fan noises. I had laid Alexander down on the couch while I turned to attend to some chore. I watched Max touch the baby and recoil. He didn’t know until then that Alexander was a living being. After that, for the most part he simply ignored him. As Alexander became more alert and inquisitive, he tried everything within a four-month-old infant’s power to get his brother’s attention, all to no avail.

On this day I am feeding a now eight month old Alexander strained peaches in his highchair. Max wants something, is not sure how to tell us. He is pointing at the baby food, which I assume he wants to try. I hold a spoonful out for him, which he eats. He makes more gestures and attempts to tell me again. I am guessing, thinking he wants his own jar of the peaches. I get him a jar and a spoon. I step away to throw the cover of the jar into the trash. When I turn back, Max has moved to the chair I had occupied, and is feeding a startled and exuberant Alexander the jar of peaches.

It dawns on Max, processes such as grocery shopping. We ride through the aisles, naming the food, putting it in the cart, paying for it, bringing it home to eat. He reads the words “dog food” spontaneously. I am dumbfounded. This awareness of the world around him is intense. At the zoo he looks in the polar bear display. “Bear, lake, swim” he says, piecing together words, the abstractions that give his world meaning.

He sits on the couch, crying because the video he chose is not the video he expected. I could drive myself crazy putting videos in the machine until I get it right, but I don’t, so instead Max cries on the couch. When he stops I ask him if he is done crying and ready to get down. He glares at me and says “No! Cry!” and begins crying again. I try not to laugh. “It’s OK to be angry,” I say. Five seconds later he says “down, watch video” and dances off the couch, happy to watch. Another day, I am vacuuming the living room. I ask Max to sit on the couch. He is in my way. He looks confused, says, “cry?” in a most puzzled voice. My literal child learning to process his world.

Max has made a friend, our neighbor’s child. They sit together on the glider swing; Max wants Hannah right next to him. When she gets off Max cries. They take turns using his Little Tikes pickup truck. Max tells her “turn!” when he wants her to get out. Later she says something to him, which he ignores, so she shouts “hey” to get his attention. He is surprised. Our houses are close together; they can see one another through their bedroom windows. They smile and call out each other’s names. When Hannah leaves the window Max tells us “I want cry!”

I take Max to the photographer for his three-year portraits. His birthday is less than one month away. I arrive at the appointment which much trepidation. Photographic appointments with Max do not have a history of going well. Portraits line the walls of the waiting area. Max looks at a portrait and says “Isaac!” I look and indeed the picture on the wall bears a striking resemblance to Lynn’s black lab, Isaac. Just then the photographer, Jeff, approaches us to hopefully put Max at ease before we begin our session. “Where’s Isaac?” he asks, trying to start a conversation with Max. Before I can jump in and bridge the gap to make it less obvious that Max may not speak or answer questions, he points out the picture on the wall to this total stranger in answer to his question. For once it is I, not Max, who is speechless.

We play a little game before bed, talking about all of the nice things that happened during the day and the people who love him. He calls this game “people why-u”. He names friends at school, teachers, uncles, grandparents, and of course Hannah. He names his baby brother “Xander” (Alexander). I am touched.

I tuck Max into bed one night, playing, reading, and enjoying our time together. For some reason I get out the Talking Barney. Max immediately looks at me and says “no talk!” I have wondered why he doesn’t like this toy, now I know. I take the batteries out and promise Max that Barney will not talk anymore. I am going on instinct, I don’t think about what I am doing. I cover the doll with Max’s special blanket and kiss it a few times. Max quietly absorbs this scene, then leans down and kisses the doll. I say, “Give Mommy a kiss”. He puts his face up to mine and kisses my lips. I have waited for this kiss for almost 3 years.

The Rest of Your Life

Summer comes and with it an end to some of the activities of the school year. We have been told that typically summer is the time to expect a holding pattern or possibly regression for kids who receive special education services such as Max does. Actually we will find in the coming years that summers are when Max surges forward. We register Max in a summer speech therapy program, knowing that we can’t afford to lose even weeks in the three year window before Max turns five. Already nearly one year of that window is gone.

Laurie Franchau, an associate of Carol’s and another remarkably talented speech language pathologist, directs the summer session. Each week of the six-week session carries a theme. It is the first time Max has been exposed to this type of teaching. Most of Carol’s materials were chosen based upon the likelihood that Max would be interested and would participate. I am uncertain how Max will respond to the toys Laurie has prepared for him at the beginning of the first session. A toy barn, small animal figures, a toy tractor and a farm puzzle. Max has only just recently stopped actively resisting toys that either have no meaning for him, or toys such as puzzles, which I know he perceives as presenting difficult demands that he meets with little success. I wonder as I peruse the room from behind the glass whether he will become belligerent, or simply ignore Laurie and her plans.

He does neither. He is interested in the farm set and the animals, though he is not exactly sure what to do with them. He moves them around, not exactly playing but wanting to. Laurie moves the figures as well, giving them dialogue. I’m hungry. I want some hay! Max watches her as he handles the pieces. On one or two occasions he lets a piece fly from his hand. He does not throw them in malice or in anger. I think as I watch that he simply is not sure how to play with them. Laurie firmly tells him it is no throw! He regards her; I would swear he is sizing her up. He does not throw the pieces again.

Laurie’s work during this summer helps him move in his pretending to the next step, with figures rather than himself. It is further removed from reality, more abstract, more complicated. We begin with real to life situations, such as eating, lying down, and going potty. One night I am rocking baby Alexander in the rocking chair before putting him to bed. Max brings the Fischer Price house with the little people in the room, and puts it at my feet. He lies on the floor and sets up the figures to do what we have shown him. Though it will take many more months for him to become creative in his pretend play, the seeds have been planted.

I arrive at Lakeview Montessori one day as Lynn is doing a group time with the children, playing instruments and singing. Max sits with the group holding a triangle, which has become a favorite object. He still has a tendency to become “bent” on certain objects or activities. Steering him away from what he is focusing upon will still often produce tantrums. Thankfully he is at the age when most children throw tantrums. He is just on the cusp of fitting in. I often lie about his age to strangers. It is easier that way. Many times his obsessions stem from something he has seen on a video. It is almost as though he finds comfort in such items, they remind him of the safety of the on screen haven we still allow him to retreat to when the demands of the world press too hard or too much. On this day, however, he plays the triangle as he should.

I have brought hamburgers and cupcakes, for Max’s third birthday is in a few days. I take pictures of Max and all of the children, which we later hang on a mural. He points to all of his friends, intrigued to see them captured on the paper. At home we have a small family birthday celebration. After a small meal, we light up the birthday candles. We sing Happy Birthday dear Max. It is the first time we have sung this song to him without a loud objection.

He opens gifts, with our help. Toys are not as difficult a challenge to purchase for him as they once were. His favorite turns out to be the plush Barney doll. Someone tries to take it from him. “Mine!” he yells as he grabs it back. I consider the irony in this, the child who shuddered at the touch of stuffed animal fur.

He sings happy birthday to himself, on this day, caught on tape. Ha dur-day, ha dur-day, ha dur-day to you! One year has passed in the three-year window we have been given with Max. While I would not have dreamed Max would now be where he is, I know we have only just begun. Smile for the camera baby, I think as he sings. It is the first day of the rest of your life.

The Second Year (1997)

All the King’s Men

Although I don’t realize it at the time, we are still in what Jim and I will later refer to as the dark years. Despite the countless hours I have spent with Max, I am still only beginning to realize how differently his brain operates. Before he spoke, the way in which he could completely ignore our attempts to connect with him and be so remote seemed deliberate. As he begins to communicate, it becomes more evident that his thought process is completely unlike any assumptions we might make.

As babies, some part of our brain is responsible for sorting out all of the overt as well as the less obvious ways in which people communicate. Not only do small children intuitively learn to interpret the communication happening around them, they also learn to imitate it to communicate themselves. Later they learn how their actions impact the thoughts and feelings of others. When one avoids eye contact, doesn’t respond to social overtures and appears aloof we want to assume it is because he knows that it will cause us feelings of hurt and rejection. It is an easy assumption to make, as looking, responding and connecting are such basic human behaviors. Except for Max they are not. Whatever part of the brain responsible for sorting out the complex process of language and sociability does not work for Max as it does for others.

We know he can learn, but making sense out of what he hears and sees I think is for him a bit like putting back together a broken eggshell. There are so many pieces. I think of this one day as I am making lunch. Alexander is crying hungrily, the microwave is running, and the dishwasher is doing its rinse cycle. Max is standing near me in the kitchen. He looks at me and says “airplane.” I listen and far off in the distance I hear it. It is not a loud jet, but a very small plane. It hits me how extraordinary it must be for him to live in a world of sight, sounds and input which must continually and consciously sort and process. I admire his efforts, his successes. He is doing what all of the king’s men could not.

We go to Hardees one night for dinner. Max has wanted a balloon, which are often available for the children eating there. As we return to the play area with the balloon, I point out a clown holding a bunch of balloons that are painted on the door. A letter is painted on each balloon, so that the bunch of balloons spells a word. We are on the opposite side of the door, so the letters appear backwards. As always I try to use the experience to build language. Drawing Max’s attention to a picture of a balloon with a letter painted on it would be easier than just a picture of a plain old balloon. It helps that he is also holding a real balloon in his hand. I point to the Max’s balloon, then to the balloon in the clown’s hand on the door, and ask him what it is. He knows balloons in the context of Carol. I am trying to show him the picture of the “balloon”, to get him to connect the word “balloon” from Carol’s therapy room, to Hardees, to the world. To generalize. I will be surprised if he answers me at all, but I ask anyway. He looks at what I am pointing to, and says matter-of-factly “R”. I realize that the letter “R” is painted on the balloon I pointed to. How he can completely miss the point of my question when he is holding a balloon and looking at a picture of a clown holding a balloon and I’ve pointed at a balloon is a decent indicator of his thought process. The fact that he focuses on the letter “R” even though it appears backwards instead of the balloons only punctuates the work that is cut out for us.

He begins speaking with phrases along with word combinations. His articulation has improved dramatically. He is intelligible to most. I have played a game often this summer while pushing Max in the swing. I make up nonsense syllables and get him to repeat them back I am surprised when Laurie, his summer speech therapist, tells me she doesn’t think he will need articulation therapy.

I evaluate and take stock of Max’s language system as we are entering McDonald’s one afternoon late in the summer. He understands labels and can label objects and a few actions. He is able to take the phrase “I want” and complete it to tell us of his needs. He can add the word “more” to the phrase and the attribute of color to say “I want more red juice.” All of the other words he has go with other words. He cannot use them alone.

In the parking lot I have to scold him for trying to run away to look at a license plate. He cries and says “sad.” I’m not sure if he is sad because I scolded him or sad because he could not see the license plates. He cannot tell me. As we sit down at the table, Max shouts “Daddy!” Max was the first person to notice that Jim has joined us. When Jim goes to buy his food, Max gets upset. “I want Daddy,” he says. There is a small baby in the room crying. This fascinates Max. “Little baby. Cry,” he tells everyone. The baby soon falls asleep in the carrier. Max is intrigued. “Wake up baby. Good morning! Peanut butter toast!” The other diners smile indulgently. They have no idea of the small miracle occurring as they witness Max’s commentary. Nor do they realize the larger miracle required if Max is to acquire a complete and functional system of language.

Chunking

It is the fall when Max is three years old. Our school year begins again with Early Childhood class, speech therapy with Carol, and OT with Bev. While it is nice to see the looks of pleasant surprise on his Early Childhood teachers’ faces when Max asks for more crackers or juice at snack time, I cannot be lulled into any sense of security.

When Max is done with dinner he will say “you’re done.” When he is having trouble with something he will tell us “I want help you.” At night when he doesn’t want to go to bed alone he will say, “Lay down with you?” When we are playing ball he will say “more back to you.” Instead of saying, “come here” he will say “I want Mommy be right back.” When he doesn’t want to go to the bathroom alone he will say “I want Mommy go potty Max.” We are wrestling on the couch one day when the phone rings. After I am finished talking and hang up he tells me “I want Mommy more couch.” When I tuck him in at night I tell him “I love you, Max.” He echoes back “I love you, Max,” then he thinks a moment and says, “I love you, Mommy.”

He has memorized phrases, pieces them together in unwieldy sentences. On language tests his scores for expressive language are higher than for receptive language. This is a big indicator, Carol explains, that the meaning of the words he is saying is still probably pretty hazy. Particularly since Max has begun to speak, Carol is more able to analyze his learning process. It is not as though now that he has begun to speak he will be up and away. He has what is called a language disorder rather than a language delay. He will not acquire language following a normal pattern.

She articulates what I have been feeling and observing, how Max takes pieces of what he hears and assigns meaning to the entire piece. She calls this “chunking.” His language comes out exactly the way we have put it in. Books, videos, our interactions with him are all absorbed intact. He has figured out what to say where, has detailed our utterances like a map to navigate through this strange world. He has memorized something foreign, the words are not his own.

This phenomenon we are observing has a name. It is called echolalia. It is evident in many of the children with autism who learn to speak. Since I began reading about autism I have read about echolalia, but could never truly understand how one could speak without understanding what he is saying. It is still difficult to describe to anyone who has not observed it first hand.

In my reading I came across several attempts at explanation, one of which seemed to apply to Max. A child who develops language normally will learn the meaning of the words, piece by piece, then combine the pieces to make up the whole thought or idea. A child like Max learns the entire phrase or sentence for a thought or idea, and with enough examples will break it down to understand the meaning of each word. It is called Gestalt processing, whereby the whole is broken down to its parts rather than the parts making up a whole. Processing, whereby the parts make up the whole. Or put another way, it is an inductive approach to language versus a deductive approach.

Max is not completely echolalic. By this I mean that he does speak functionally. Yet he has learned what he knows in pieces. And in the coming months as he continues to absorb what he hears and sees, it will take all of our efforts to help him sort, organize and use his speech for functional communication.

The Child

One year has passed since we found out about Max’s disorder. The electrical shocks of despair are gone. The fall doesn’t feel as raw, the sky not as oppressive. I don’t feel as though I am suffocating anymore. We continue Carol’s natural language approach in our family outings and our daily lives. It has become more a part of our life, and Max now seems like my child rather than my project.

We go to an Apple Festival in Wisconsin. On the way there we stop at a pumpkin patch so the children can choose pumpkins for their jack-o-lanterns. We have begun toilet training with Max. There is such a thing as too much information, and the reading I have done regarding toilet training children with autism leaves me less than optimistic. Max surprises us with his willingness and proficiency. I will discover later that he was the easier of the two boys to learn toileting. Now, on this day, after an hour-long car ride, Max makes a pit stop in front of the van.

Our intention is to get both of the boys to pose for a photograph in the pumpkin patch. It seems though that this was not their intention. Although it is hard to see looking back through our photo albums, photographing Max requires some effort. He hasn’t yet learned to look at the camera, so Jim must stand behind me making faces or laughing a spooky laugh to make Max look and smile. On this day, Alexander has his own agenda that does not include sitting next to a pumpkin. “Don’t walk!!” I keep saying to Alexander. He has just learned to toddle and is eager to try out his new legs in this field of shoulder high vegetables. I snap several pictures in which Max looks resigned to sitting indefinitely and Alexander is crying.

We move on to the small town in which the annual festival takes place. Max’s acceptable food repertoire is limited, partially by his own tastes and partly from the wheat and dairy free diet we are maintaining. We walk through the food portion of the festival, and then move on to a small carnival and petting zoo. Max is leery of the animals, which are capable of many unpredictable smells and sounds. I convince him to touch the fur of a sheep, which he does gingerly, with morbid fascination. He is more interested in the poor beast’s face, which he pokes at. He has recently learned to identify all of the body parts on a face and is eager to apply his knowledge. He manages to poke the poor creature’s eye once or twice before we move on to an animal with faster reflexes.

After the petting zoo, we visit the small carnival. There is a section with a few kiddie rides. At this point Max has not been able to leave our sides in public with any assurances that he will not run away or endanger himself. While I worry about his actions, we decide to purchase a few tickets and let him experience the rides. He climbs onto one of many small boats, which are attached to a central cylinder that turns, causing the boats to float around in a circle. As the ride begins, my own stomach lurches, wondering what his reaction will be. A look of pure delight washes over him, as he floats around in his small boat. He doesn’t look at us or wave, as the other children do. He looks up, where I notice there are mirrors. H sobs when it is time to leave.

At Halloween time Max wears a Cookie Monster costume my mom has made for him. He still watches “Do the Alphabet” and another Sesame Street video “Fun With Numbers.” His real passion is the purple dinosaur, Barney, but I can’t stomach the creature. So Cookie Monster it is. We attend a small function at our zoo which hosts trick or treating, and Jim also takes him through our neighborhood. He tolerates the costume for a short while, and says “trick or treat” on cue. He does not care for much of the candy he collects, and I sense his relief when the entire affair has ended. In the coming years not only will he completely enjoy Halloween as every other child does, but he will remember these events. I discover this as I am cleaning, after this story has ended. He sees the Cookie Monster costume in the closet and says “Hey, that’s my zoo outfit.” We have no idea at the time.

Football season is in full swing as we are riding in the car one day. Max is yelling. I tell him not to yell in the car. He thinks a moment, then says “no, football!” To further emphasize, he yells “touchdown Packers!” Later we are at church. I keep telling him to use a whisper voice, though my efforts seem in vain. He actually sits through the service, occupied by shapes in the architecture, and of course his cup of chocolate chips. Later when we go up for communion he is amused by the stop and go of the whole process. He calls out “stop” when the line slows and “go” when we resume walking. I smile to myself, knowing that Max will be disappointed when he realizes that this stop and go game is only a bi-product of a bigger process, and not done for the sheer enjoyment of the game. Later that night we are riding in the car, when in a stage whisper Max says, “use a WHISPER voice.” So although my attempts in church weren’t entirely futile, like most things timing is everything.

We ride in the car and Max’s commentary is continual. “I see UPS truck!” “I see school bus!” “I want drink of water. No drink of water, sorry.” “Up the steep hill.” “I see house, and steps, another one steps.” “Mommy, and Sander and Max, ride in white truck.” At home Max sees a Pizza Hut commercial on TV. “I love pizza,” he tells me. He learns to hug, as with everything else, from a video. Of course he pairs it with a line in the video, saying, “Oh, thank you Barney” when he hugs us. This evolves to Max hugging and saying “great big hug, how nice”. I don’t care what he says when he hugs me. I just love to feel his little arms around my neck.

Celebration

The previous winter, when Max was 2 ½ and completely non-verbal, when we had no idea of what lay before us, I did what I called “snowsuit math.” I calculated how many times per week I had to put on and take off snowsuits, boots, hats and mittens. I think the number was upwards of 80. That was not counting any unplanned outing such as the grocery store or the gas station. It was my way, I think, of putting some tangible number on the daunting tasks with Max that stood before me. A feeling of accomplishment at the end of the week, until the following Monday when the math started all over again. Thankfully now, though working with Max is challenging, there are signs of accomplishment beyond “snowsuit math.”

As he struggles to assert himself, he experiments with negating. “I want NO go potty.” “I want NO goodnight.” “I want NO shirt on.” It gets a bit tricky to understand. “I want NO radio off” translates to “leave the radio on.” He experiments with the word “don’t,” which initially comes out in the form “I want don’t . . .” He manages to straighten this syntax out and revels in his ability to say “no.” “I DON’T want listen.” “I DON’T want choice.” “I DON’T want sit on the couch” (for a time-out). When he asks repeatedly for a drink of water, but I am busy, I tell him to get a drink of water in the bathroom (where he can reach the sink). He tells me indignantly “I DON’T want bathroom water!” Later he doesn’t want to go to bed and I tell him to go to bed anyway. He thinks a moment and says, “I DON’T want anyway!!” He gets in trouble for not listening and has to sit on the couch. “I’m sorry,” he sobs.

Jim’s uncles get together most Saturday nights to play cards. Max loves their card games, surprisingly loves this loud, large, boisterous Polish family. He has learned all of the uncle’s names, though when asked he says them quietly, shyly. He announces one morning “I want play cards!” It is Saturday, so we honor this request and join the card game that night. The uncles love to hear him speak, as we all do. They ask him over and over again “who is this?” When they point to Alexander, Max thinks for a moment, then says “brover” (brother). Later we have a small crisis, Max’s special nighttime blanket cannot be found. He is distraught. I comfort him while Jim searches. We name everyone at the card game. “Uncle Ronnie, Uncle Johnny.” He thinks for a moment, and then says “uncle grandpa?” He is realizing the different relationships people have to one another.

In watching Max play with Carol over the past few months, I have been able to see which kinds of toys he enjoys, and which would be most beneficial for our language goals. He has shown a particular liking to a dollhouse that is made by Little Tykes. It is appealing because all of the furniture and accessories are actually miniatures of real life Little Tykes toys. The swing, table, sandbox, climber - everything is a miniature of something he has played on or with in the real world. And while his pretend play still lacks imagination, I think this may be a good bridge into truly imaginative play. He is quite eager to play with it at speech therapy. In the months leading up to Christmas I scour toy stores to find the house and accessories, many of which are being discontinued. I am not able to find the exact item, which is at least a few years old, but find the current model and as many accessories as I can. It is exciting to have a gift for him that I know he will like.

I have gotten into the habit of pointing out anything that might be interesting as we drive, and attach language to it. Over the course of the few weeks leading up to Christmas he announces several times while we are riding in the car that he wants to ride the bus. I decide that during our holiday break that we will have to go for a bus ride. I arrange for my mom to drive us to the bus stop, and then meet us at our destination with Alexander. We decide to meet up at the train museum, to look at their Christmas display of model and real trains.

After waiting a few minutes at the bus stop, the bus arrives. We board, pay our money and find our seat. I am certain that the other passenger think it odd that I narrate all of our actions. Or perhaps not. There are much more interesting characters than myself on the transit that day. We sit in our seats and I point to places Max knows out the window. We even sing The Wheels on the Bus, a current favorite. We have one tense moment when I ask Max if he would like to sit in the front seat, meaning closer up front. He understands this as an offer to let him drive. Thankfully our stop is not far off, and I am able to distract him with the sights of downtown. We rendezvous with my mom and do a small tour of the train museum.

Max still has no awareness of those invisible physical boundaries that define “close” and “where I can see you.” Short of holding onto him, it is very difficult to keep track of him while he is learning to stay with the group. It takes an enormous amount of energy to keep him focused, to divert his attention when he gets “bent” on something, and to survive the transition of leaving. Yet outings such as this are important for Max to connect language to an experience, as well as to learn how to cope and respond in settings he is not familiar with. As a reward for all of his efforts, we end the outing with a trip to McDonald’s where Max can watch the busses out the large window overlooking the main street through downtown. Between the outing and its greasy reward I have done my blood pressure no favors this day. I am hoping the expense to my arteries pays out.

When Carol first came to us, she gave me a book to read, written collaboratively by a few of her colleagues. It stresses teaching language in the everyday occurrences that happen in a young child’s life, such as baking, helping out with laundry, cleaning up and other household events. The book was aptly titled Natural Language, and outlined the various levels of thinking skills associated with these real life ways to teach language. At the time I read it, it seemed very unrealistic. Trying to engage Max in baking or laundry sorting seemed impossibility. At that point I still had serious doubts Max would learn language at all, and the book gave me another hopeless feeling. If children learned language best by being involved in the day-to-day activities that fostered its development, where did that leave us? Some days it took all of my efforts to engage Max at all, let alone in a task like baking where the rewards weren’t absolutely immediate. And laundry? Max barely tolerated clothing. Simply getting him to keep them on his person was enough of a challenge, without trying to get him to participate in their laundering. Yet I filed the information written in that book away in my mind, and as Max slowly became easier to engage, I would try these types of activities with him. Baking Christmas cookies is something we are finally able to do this year. Along with the normal mess and chaos that baking with two small children involves, keeping Max on task is demanding. I make the effort, if for nothing more than the childhood memory of doing it.

As Christmas time draws near we visit Santa Claus at our local mall. We have discovered recently that Max is much more able to respond to a new situation, such as Santa Claus, if he has first seen and heard about it in a book. We have read a book called Santa’s Workshop several times in preparation for meeting the elf himself. Max approaches Santa, but I realize at the last moment that the book made no mention of sitting on laps, not one of Max’s fortes to begin with. Santa, I am sure, is accustomed to the effect he has upon Max, for he is just friendly enough to put Max more at ease. Max shakes Santa’s hand in lieu of more personal contact. At my suggestion Max shares a French fry with a less than eager Santa. Another small part of how I keep Max constantly expanding his interactions Of course Santa knows nothing of this. His only concern is to discreetly dispose of the cold French fry.

I schedule a Christmas portrait appointment for the boys with some misgivings. While Max’s performance at the photographer’s has improved over the last year, I still enjoy the ordeal about as much as I enjoy dental work. I have known this photographer, Jeff, for many years, but have never gone into detail about the situation with Max. It is often easier to let casual acquaintances such as this to think what they may of Max.

I make the mistake of selecting formal clothing for the boys to wear. Alexander has little objection to the velvet and tie he is dressed in, apart from the zipper that runs the entire length of the outfit in the back, which is broken. After muscling him into his outfit, I turn to Max. I made the mistake the night before of trying the outfit on him, so he knows immediately when he looks at it that he hates it. I cannot bully him into wearing it unless I want a tearful portrait. Somehow I convince him, right down to the buttons on the shirt and the hard shiny shoes. I don’t know what I was thinking when I purchased these clothes for Maxwell.

Once dressed we spend a few tense moments waiting, with Max bristling about his clothes and me trying to calmly distract him while keeping tabs on Alexander. It was not the day to forget my antiperspirant. We are ushered into the studio where the fun would truly begin. Max refuses to sit in his clothes, as he doesn’t want the pant material touching his legs. Finally we are able to convince him otherwise with some sort of bribe. He sits on the wicker rattan chair, but it is slippery against his pants and he keeps sliding around. Alexander sees Max sliding and decides to try it himself, while Jeff attempts in vain to focus his camera on these two eels disguised as my children. As if things could get no worse, Alexander slides right off of the seat face forward onto the floor and bloodies his nose. Jeff is then somehow holding Alexander with a tissue pressed against his face while I am cajoling Max to sit still and smile. After a few clicks of the shutter we decide to quickly photograph Alexander, before the nose swells too badly. With all of our efforts focused upon him, no one notices Max, who has stripped down to his white little boy underwear and black dress socks. He runs behind the backdrop with me in hot pursuit. After the session has ended, Jeff’s only comment is “Well, that wasn’t like anything I’ve ever done before!” To my surprise he has continued to schedule appointments for our children, who thankfully have become easier to photograph. I cannot look at the photos, which actually turned out nicely, without seeing a picture in my mind of Alexander’s blood spattered face and Max streaking in his black socks and white underwear.

“Jingle bells, jingle bells.” Max knows several songs now, but this one is his favorite. When he is happy his body quivers. He is so genuine and unabashed, his delight is contagious. He sings into the microphone of his tape recorder, his precious voice amplified reaching the corners of the room, the corners of my heart. I recall a time when my yearning for the sound of his voice was an ache, a tangible pain. I stop and devour it’s sound. It is exquisite, above all others this Christmas, our joy.

This feeling of amazement I have as I watch this child blooming takes me unaware at times, and the tears catch in my throat. I watch Max dance and sing, he is my own heart. The hardest part, the unknown future, has so far been kind to us. We have faced the dark nights and have discovered a strength inside, to endure, to try and to hope. We have learned to celebrate.

Belonging

I watch through the two-way mirror at the speech clinic while Max plays with Carol. An aura has come over him of late; he does not want me to leave him. Tears well up in his eyes as I tell him goodbye. He does not know I stand at the glass three feet away and watch him play. He looks at the door often, as waves of grief wash over him. “Mommy” he whispers as his tears overflow. He has learned to want me, and watching him from behind the glass is bittersweet. During his first three years of aloneness, this is the first time he feels alone. We have brought him into a world where he is connected to us. He struggles with our stepping away, even briefly. His relief is palpable when I return, his emotions physical. I can only stand by as he discovers this separateness and the powerful feelings of attachment.

The power of many of his feelings overwhelms him. He rages at me with fury at the limits I set for him. I hear my words come out of his mouth as he struggles to manage the emotions of frustration and impotence at having to comply with our expectations. In his restless inability to settle upon an activity he demands videos, or rather the same video over and over again. I will not allow him to watch. He screams, stamps his feet, practically convulses with anger. While he is crying he is repeating words I have said to him. “Stop it! I said no! In your room!” I hear myself in his words, for he does not make things up, and am ashamed. I try to remain calm and neutral, some days more gracefully than others.

We have noticed in working with Max that we all must survive the huge waves of difficult behaviors that normally precede his leaps of growth and development. These will come to include tantrums, whining, arguing and a quiet brand of defiance. I will realize later, after surviving similar patches with the other children, that these episodes are not limited to Max. What is particular to Max’s situation is the duration of these difficult periods, and their persistence. I am certain that Max had a tantrum nearly every night I picked him up from Lynn’s house for three entire months, because he wanted to go to McDonald’s. It took him that long to understand and accept the concept of sometimes.

Other times he is more carefree, I even think he likes being part of this family. In the morning he marches into Alexander’s room and loudly announces “good MORNING Alexandy!” The first words out of his mouth after his nap (which recently consists of stripping naked and taking out every toy in his room) are “I want Alexandy!” He persists more in wanting him awake than I do at wanting him to sleep, until I finally agree that we can wake him. “Wake him up, OK!” he tells me. Of course after Alexander is awake, most of what Max says to him is “no Alexandy! Turn!’ (meaning Max’s turn with a disputed toy) or “share NO!” He is learning that belonging comes at a price. I think he wants to belong.

I ask him what he is doing climbing on the railing in a restaurant one day. He loudly announced, “fluffing” (a family term for gas). Those close by us are amused at his honesty, if not the fact that he missed the point of my question. I follow up with “what do you say when you fluff?” He thinks a moment and says “thank you!” So many rules to learn when you’re part of a world.

One day, against my better judgment I take out the play dough, which normally remains hidden on the top shelf of the closet. Max and Alexander love to drive cars through their wonderfully mushy roads. Max insists on having a particular car, which Alexander, at least for now, is happy to relinquish. It appears that the car must go to the carwash. I love to watch Max have ideas that show me he really is with us. I want him to belong too.

Icons

The separation issues and tantrums intensify in the weeks following Christmas. On some level I am certain that Max is experiencing frustration because he has much more to say than he is able to. His distress is genuine. He is struggling with the ambivalence of being 3 ½ years old. On top of this, he struggles to move beyond the impasse he has reached in his ability to communicate.

The difficult work he faces at Lynn’s house of separating, coping, surviving and communicating makes him resist going there. At home, no matter how hard I try to get him involved in play, he continually wears me down to watch videos. We have kept them in the house as an allowable release, but of course the concept of moderation is lost on Maxwell. I am convinced after our Christmas break that, no matter how difficult it is for him, Max needs to stay involved in activities at Lynn’s house, speech therapy and Early Childhood Class. This is where he will work through the stalemate he is at with his language, and resolve the other conflicts within which are making him so unhappy.

This most recent crisis is only one in a series of challenges we have overcome with Max at Lakeview Montessori. It was winter the year before this when he began attending. On days the weather permitted the children would don their winter clothing and go out to play during the afternoon. Max hated every sensory part of this experience. The coat, snow pants and boots were all too restricting. He resisted wearing mittens, and then became upset when his hands got wet from the snow. Most of the time he would stand in the yard, stiff as a board and scream. Lynn did not lack in compassion. Nor did Linda, a dynamic young woman who worked with Lynn when she was not attending graduate classes. They both knew that they could not allow Max to dictate whether the group played outdoors. Throughout that first winter, Max gradually learned to cope with the snow, cold and the winter wear which accompanied them. Max was not the first child to throw a tantrum at Lynn or Linda’s feet. The greater lesson he learned was that his tantrums, like anyone else’s, would be ignored.

He also learned that ignoring expectations did not make them disappear. At lunchtime all of the children were expected to clear his or her eating areas, throwing debris in the trash and putting dishes in the sink. They were also expected to wash their hands and faces. In their play they were expected to take responsibility for replacing toys and materials before choosing something else. Max resisted all of these expectations. In part he resisted for sensory reasons. He did not like to touch things, such as a banana peel or the pull back cover of a pudding treat, and risk getting any foreign substance on his hands. In part he resisted his responsibilities because they were a frequent and inconvenient interruption of his constant flitting from thing to thing. In part he resisted because he saw no reason to behave any differently at Lakeview Montessori than he did at home. We had seldom pushed the issue of personal cleanup responsibility, as we had wanted to keep his interactions with toys as positive as possible. In part he resisted directives because he was a child, and that’s what children do.

No one raises a voice at Lakeview Montessori. Children and adults alike are expected to speak positively and act respectfully towards others. Just as Carol had a remarkable talent for getting Max to interact, and Bev had a knack for getting Max to engage in activities that challenged his senses, so did Lynn and Linda have the tools to help Max comply.

For Lynn it was her sheer determination and unwavering belief that Max could and would meet our expectations. It also helped that she had an uncanny knack at knowing what each child was doing, or was supposed to be doing, along with unlimited persistence to redirect until the task was done. Often she would have to redirect Max at least ten or fifteen times simply to get him to pick up his banana peel and throw it in the trash. She also enlisted the assistance of Dale, whom the school district had employed to help Max remain purposefully on task and benefiting from his educational setting. Of course it would have been easier to throw away the banana peel, or pick up the toys herself. But as a gifted teacher, she realized that the lesson was not, in this case, about a banana peel. What this taught to Max was that it is not all right to simply walk away from what someone is telling you to do. Her undying follow through to get Max to throw away his banana peel or put away toys set an important precedent of listening and complying with authority, no matter what reason he had for not wanting to.

With Linda it was her complete authority and conviction that people can and will be responsible and respectful. Linda is as direct and forthright as she is warm and loving with children. Much later in this story, Max would go head to head with her, arguing with her. Whether the incident was about using the computer or eating treats prior to finishing healthy food, the result would be the same. The treat would go in the trash or the privilege of playing would be lost. It was she who would tell Max “You’re badgering me” once or maybe twice, before he was sent off to bed to reflect upon his transgressions. I had heard someone once say that if a badger bites your leg, you have to kill it first and then break it’s jaw to get it to let go. If Max was this persistent in his efforts to get his way, so was Linda as persistent in teaching him to respect the authority of her words. This happens much later in the story, however.

During the present crisis, that of Max’s extreme difficulty with separating from me and coping at Lakeview Montessori, Linda played a different role. When Max’s coping difficulties became so intense, Lynn would call me in the early afternoon when he began to completely unravel. Our goal was to extend the length of time he was able to interact, communicate and cope in that busy environment before melting down. It came to be that I would often pick Max up at around the same time Linda would arrive from one of her graduate classes. Because of this, Max had determined that Linda’s arrival should and would always signal my eminent return. Linda was not able to even walk through the door without Max crying. “Mommy, white truck, where are you?” He would sob at the window. On rare occasions he would nap at Lynn’s, and waking to find Linda would only intensify the screaming which waking from a nap still caused. Later in this story Linda would have fond memories of she and Max lying on the sidewalk, looking at the clouds and talking about their shapes. She even remembers fondly the arguing, which she missed when he eventually stopped. But none of us has fond memories of this dark time with Max, when all he wanted was me and home, and neither of those things could help him do what he needed to do.

In our odyssey with Max we had discovered that he learned best by reading something in a book. In the months after he first allowed me to read him the counting book, we were able to acquire quite a collection of books that Max would listen to willingly. The types of books we are most successful with are books that provide exposure to a topic without having to follow a plot. We found this to be particularly useful for the last stages of toilet training when we discover a book about poop, which inspires Max. His first successful venture into the bathroom to complete the mission included the entire family for the final sendoff, while he narrated the event with words from his book. “Poop in the toilet! Big grown up boy!”

While this book is a godsend, I am unable to find books about other specific events in Max’s life that he benefit him, such as the current trauma we are enduring. Carol suggests that instead of searching to find a book that might not be exactly right, that we write our own books instead. It is a ridiculously easy solution that I’m glad she thought of. I write the first of several books one weekend using the computer, printer and clip art program. While Going to Lynn’s House will not be a Caldecott winner, I believe it certainly helped Max cope with the separation struggles we experienced during those winter months, and eventually to overcome them. It also paves the way for other books I will write to target specific interaction skills and social situations.

His repertoire of phrases increases dramatically. He tells me “good night sleep tight, don’t let the bed bugs bite, Mommy” when I put him to bed at night. When Jim makes a path in the snow out to the kennel, Max enthusiastically chases up and down the corridor. The walls of this corridor extend above his head, and he giggles as he tries to get us to chase him. I’m not sure when he started laughing in pleasure, though I know he used to laugh only when he was physically tickled. He breathlessly tells us “I want Mommy road. I want Daddy road.” He calls his favorite music video “Preschool Songs TV”, to differentiate it from the audiotape of the same songs. When he wants me to toss him up in the shaft in the ceiling of our kitchen where there is a skylight he tells me “just one more time, that’s all!” This will no doubt send me to the chiropractor any day. If he sees he is swaying me into doing something he wants he says “Ok! All right!” One day he has asked for a sucker, which I tell him he can’t have. He feigns misunderstanding, points at the suckers and says, “No, right there, see?” As if I needed any more convincing. One night as we are riding in the car Jim and I are debating whether to go to an uncle’s house. Max pipes in from the back seat “we can do that, no problem!” He has yet to use many of his words in an original construct. I marvel that he can place all of these phrases in the correct context. He is a tape recorder disguised as a human child.

He is increasingly interested in the computer. This form of media is something Max focuses on intently, and I see it’s potential usefulness in advancing Max’s language skills. With this in mind, my dad donates a computer from his workplace that has been damaged by an electrical failure and repaired. I doubt Max will understand how the mouse relates to the arrow on the screen and the functions that the mouse click executes. We purchase a touch screen so he can operate it without frustration. Carol also works with him on the computer at her speech clinic, and also on a laptop computer she brings to her itinerant visits at Lynn’s house. While using the computer carries the risk that Max will tune out the living world, it proves to be useful in focusing on vocabulary areas in which Max is lacking, such as verbs and adjectives. Later it will be instrumental in his learning to follow directions, understanding concepts such as same and different, developing sequencing, and putting together a phonetic system for reading. There are of course times when the obsessive and tuning out behaviors the computer creates overshadow its teaching value, and we pull the plug. This of course is met with tantrums and badgering, to the point where I wonder if the benefits we see truly outweigh the hassle. Overall I think they do. He seems to relate to the device so naturally. Within a month or two he has figured out the mouse. He knows intuitively how to navigate through the icons. I think this must be how his brain is laid out. He dives onto my chair whenever I am interrupted from my work, which unfortunately is often. He discovers how to exit my programs and shut down. Thankfully he saves my work first.

I wish

A slow shift begins in the way Max is thinking. I can only guess this is true, as I guess at so many things about him. After months of referring to himself as “I” in the phrase “I want”, he suddenly changes this phrase to “you want”. I have been watching for this pronoun reversal. It is a hallmark in the language of kids like Max. I can only think that at last he understands some saliency of the words he has memorized, and has determined through listening to speech that the pronoun that refers to self is “you”. It is what everyone calls him. Do you want a drink, what are you doing, you did a nice job. I am pleased that individual words are taking on meaning for him, but it makes me realize how tricky our language is. At times such as these I am impressed that most children learn language innately.

When he goes to the bathroom he will loudly announce, “you went accident!” He must have decided that accident refers to “pee”, as we have reminded him from time to time “no accidents!” He also discovers how to replace key words in phrases, saying, “It’s dark outside”; “it’s windy outside.” Language to him is more like a jigsaw puzzle than a fluid thought process. He rearranges key pieces of well-known expressions, comes up with variations of the same theme. He also learns to tag the person’s name he is addressing to the end of what he says, which gives him one more piece to add to the picture. We are riding in the car one day when he starts coughing fitfully. I ask him “are you OK, bean?” “You’re OK, Mom.” is his reply. More pieces to the puzzle emerge when he learns to use “this” and “that”. As with everything he assimilates, it belongs with other phrases. He tells me “you want that one yellow cup” or “you want this one chair”. He finds a bag of chocolate chips in the cupboard and exclaims, “I found you chocolate chips!” He tries again “I found it chocolate chips!” Another time he finds his favorite video and exclaims, “oh, here he is!” He is afraid he will get left at Lakeview Montessori one day when I have to drop off a check. He tells me “you want be right back” meaning he wanted to wait in the car. Another day when he doesn’t want to wait in the car at the store he tells me “you want go with me”.

He invents ways of expressing things he has not memorized. He wants me to help him with the hood of his jacket. “Hat coat” he keeps telling me. After seeing what is called a “game machine” on a video, he refers to the exercise equipment room in my parents’ basement as the “game machine room”. Alexander throws up on Max’s head one day, which sends him into orbit. “You need a towel! You need a towel! Dry him off!” he screams. A few days later he asks me for a towel, which puzzles me. A few seconds after I give it to him, he throws up in it. “You need a towel” is the dramatic way he learns to tell us he is going to be sick. Thankfully I made the connection that to Max was so obvious before it was too late. Another day he is afraid of a strange dog. “It’s OK be scared Santa” he kept saying. Apparently his experience with Santa Claus last Christmas is the link to his emotions of fear. This evolves to “it’s OK be cry.” His language is a maze in which we continually are moving; I’m not sure at times though we are going anywhere but around and around.

We purchase bunk beds for the boys so that they can share a bedroom and free up one of our bedrooms for a playroom. I spend a few weeks stripping the nursery wallpaper off of the walls of what will become the sleeping room, and applying new wallpaper. As with everything in my life, I am working under a deadline to complete the wallpapering, right up until the night before the beds will be delivered. I lock myself in the room this night, leaving Jim to entertain the children while I work Many times during the evening I hear scitchy scratches on the door, until finally Max bellows “Open this door!” I’m not sure where he learned to say that, and I laugh out loud.

The day the beds are delivered both of the boys are gone. When I pick them up I tell them there is a surprise at home for them. On the way in the house, Max makes mention of a tractor. This comment comes from so far afield that I physically stop and try to think of what he is talking about. I realize that some months before, during summer speech therapy with Laurie, I had bought him a toy tractor to expand upon the farm play he had enjoyed with her. When I had presented it to him I had called it a surprise. I shake my head in amazement as I walk into the house. Jim has told Max that he will have a new roommate, referring to Alexander. Max, who has formerly slept in what is now the playroom, completely misunderstands. From that day to this he refers to the bunk bed as his “surprise bed”, and for many months after the move he refers to the new bedroom as “Room 8.” Reminiscent of the days he would say “99” rather than nighty-night, I still chuckle, even now as I write. His brain will never cease to fascinate me.

It is during this time that the echolalia we have seen increases to nearly nonstop proportions. He ingests huge pieces of dialogue, then sorts out it’s meaning. I feel his head at times, half expecting it to be hot from the sheer amount of energy this must take. Unfortunately this sorting out often happens aloud, as he repeats entire books, videos, even conversations. At times I feel as though my ears must be worn nubs on the sides of my head. Looking back now, I am completely amazed that anyone’s brain can record so precisely and recall so perfectly. I am even more awed when I discover that his words are triggered by events around him that bear some similarity to the events surrounding the words in their original context. At the time, however, I have little appreciation for the creature spouting Barney dialogue in my living room. His verbal hemorrhaging is enough to drive me batty. I remind myself that this is how he learns, and recall the time when I longed to hear his voice.

I never thought I would consider his talking noise, but that is what this talking is. He is not using speech for any communication function. Following Carol’s lead, I do not repress this verbiage. Rather I connect it to something to make it purposeful. I know enough of the videos to recognize much of what he is saying, and am able to comment “oh, you’re talking about Baby Bop’s blanket”, or whatever is playing out in my living room at the moment. He will often use this echolalic speech when he has no real words to apply to a situation. At these times, again by Carol’s example, we will tell him “we’re not talking about Barney now, we are playing in the kitchen.”

He reproduces in explicit detail, right down to the posture and inflection of the speaker. He does this with action figures as well. In this sense he is making his memorized dialogue a bit more meaningful, as it is connected to the play-acting that is being carried out. However, as Carol points out, most children do not have entire volumes of Barney videos memorized, so the function of this play is limited.

His repeating takes on a new dimension when he discovers he can act out as well as reiterate dialogue. He stands on his chair at the dinner table, which is met with staunch disapproval. He sits down, then exclaims, “no Pat no, don’t sit on THAT”, pretending there is a tack on his chair. Another day he rings the doorbell at my mom’s house. When she opens the door, he tells her “Hello Mrs. Woods. Guess what, Arthur lost your dog!”

He picks up social phrases quickly, from books, movies, even the evening news. When someone tells him goodbye he will reply smartly “bye, see you soon.” He tells the vending lady at the popcorn stand “popcorn’s a tasty treat!” At an adult neighbor’s birthday party he tells everyone “this is the best birthday party ever!” Only I know his speech is canned. One night we are on the rocking chair, I am tickling him. When I stop, he looks into my eyes and says, “Tickle my head?” It takes me a moment to realize what sounds different about him - he has said “my” and not “your”. He goes on to ask me to tickle various other parts of his body, using “my” each time. It sounds so natural. When he speaks to me in this way, or when he is struggling to express his own thoughts I can see him, hear him, know what is Max. I wish he didn’t need to use the words of others to let us know him.

Building Rome

In the meanwhile, along with all of his one sided chatter, Max is slowly learning to answer questions. We begin with the basics, pointing out pictures in books. I have realized that it is not so much the answers that are puzzling, but the question words themselves. An extension of the pronoun issues, these question words of what, where, who mean something different every time they are spoken. They can’t be learned in Max’s way, so we must figure out another. I begin in books, an obvious first step for Max. I ask questions he knows the answers to, then tell him the answers and reiterate the question. “What is she doing? She’s swinging, that’s what she’s doing.” It is a method Carol also employs. He comes to understand our attempts, and begins answering our questions, if only about an immediate event or situation. When he doesn’t know the answers he mumbles something, then says in the exaggerated voice I must use in teaching him “that’s who!”

After nearly one and a half years of enticing Max to play with toys, his play has become relatively appropriate, if not a bit stilted. With the coming of spring, we encounter another situation with Max that will require authorship. As the children at Lakeview Montessori begin playing outdoors more, Max becomes fixated on a small purple tricycle. He wants to ride it exclusively and has a meltdown when any other child attempts to ride it. Carol suggests that I take pictures of an episode surrounding the purple bike, and then make it into a story.

The purpose of this story will be to help Max accept that he does not have sole access to the bike, and also to give him some words to say to friends during other outdoor play episodes. With Carol’s help, the text for the book is completed, and includes labeling of feelings and specific cues for using words and looking at faces. Max likes the book immediately, and it contributes to his ultimate ability to cope and move on from the purple bike attachment. It also sets the stage for the beginnings of peer interaction we will see over the summer with one of the older boys, Andy.

His initial attraction to Andy is his ability to climb to the top of the monkey bars. Max is bent upon mastering this feat, much to Lynn and Linda’s panicked dismay. Finally they learn to relax and let Max climb. Perhaps it is related to his sensory issues, but whatever the reasons Max will rarely if ever attempt something he is not physically capable of doing. Over the entire summer of learning to perch on top of the bars, he does acquire a few nasty groin bruises from all of the straddling. But he never once falls.

The sight of he and Andy sitting atop the monkey bars, doing “boy” stuff like knocking each other’s baseball caps to the ground or playing catch brings a sweet smile to our faces. Andy is forgiving of Max’s idiosyncrasies. He pares down what he says to Max to simple, three word statements. This “telegraphing” is similar to what we did with Max when he first began to acquire our language. Andy instinctively knows that this is how Max will learn to communicate with children. The other older children see Andy doing this, and soon all of the children are speaking to Max in simple, easy to understand phrases. Andy also expects Max to answer him, and persists when their communication is derailed. They share similar interests such as the computer and books, and Max begins the long process of developing peer interaction with this patient teacher.

This friendship with Andy and the other children is also instrumental in helping Max overcome the sensory issues that until now have inhibited his outdoor play. Thanks to Bev’s steady work, Max is able to tolerate a greater variety of textures touching his hands, leading to sandbox play, along with an overall enjoyment of the outdoors. The children love to race around the sidewalk perimeter that borders their play area on bikes. Max wants to be included, but struggles with pedaling. Bev suggests that we affix wide Velcro strips to the pedals of his bike at home, so his feet won’t come off of the pedals on the “up” stroke. This gives Max the sensory input he needs to master the concept of pedaling. Steering and watching where he is going are also skills we will work on and help Max to master during this summer. I laugh as I watch Max playing McDonald’s drive through on the trikes in Lynn’s play yard, ordering a two cheeseburger meal with a super size fries and diet Coke. This is exactly what we order when we go to the real McDonald’s. The scene is one Lynn described to me when we first began this odyssey, and I think then that lightening does occasionally strike twice in the same place.

Max begins referring to himself as “I” occasionally. The confusion his pronoun usage has wrought intensifies. Until now we have been able to reverse most of what he says to understand him, but the sporadic correct usage of “I” and “you” changes this. We ride to Lakeview Montessori one day. He has been talking about a computer game they play there, something similar to Packman. He has needed Andy to play with him, to navigate the arrow keys to move the players, but he is mastering the concept. He tells me “Going to Lynn’s house. Play Bachman. Max play with you.” I’m not sure if this means that he plans to play with Andy, so I ask him. We go around a few times with confused pronouns until an exasperated Max retorts “I’m going to play Bachman by yourself with Max!”

He falls in love with Dr. Seuss books. He has an understanding that the written words on the pages are words, but hasn’t developed the phonological system for reading. He gropes at it, understanding that the letters combined in certain sequences make up the words. I overhear him looking at books one day. “2 - 2 - 9 spells cat!” he exclaims proudly. Before his Dr. Seuss craze is over, we will own every book and video in the collection. He also develops and interest in Mercer Mayer books. Both of these are also available as CD stories on the computer as well. Many mornings he arrives at Lynn’s house demanding that she read Fox in Sox to him, not once but several times. It is something she agrees to do only if she has already had several cups of coffee. It’s cruel, she explains, to expect her to perform tongue twisters early in the morning without caffeine.

His echolalia intensifies as he adds these volumes to his memory bank. There is no limit, it appears, to what he can memorize. He has The Cat in the Hat book out one day when my next-door neighbor is in our yard with her daughter. Mary is not stranger to people with high functioning autism, having worked herself as an employment coach for the disabled prior to starting her family. Max’s reciting is at best commonplace in our home, and mostly just a complete annoyance. I realize however that other people don’t experience this with their own children, and most people have never even heard echolalic speech. He has taken the book and is sitting on one of the benches on our patio, reciting verbatim as he leafs through its’ 50 or so pages. I see her staring at him, and as she looks up to meet my eyes, I say, “It is amazing, isn’t it?” What she doesn’t know is that he does this with perhaps thirty or forty books, some of which have more than 60 pages, without missing a word. And yet he still can’t answer a simple question such as “what’s your name?” His perfect ability to emulate what he sees and hears leads to some entertaining episodes. We are eating at a restaurant one night when Max sits up tall and beckons the waiter. “Excuse me! Excuse me! We need another chair!” he says to a very puzzled server. There are several empty chairs already at the table where we are sitting. It would have been impossible to explain in ten minutes or less, had I been able to stop giggling enough to speak.

I can afford the luxury of occasionally laughing at his antics, as I do see him slowly begin to sort the words he has ingested and use them as his own. One night he is playing with the Fisher Price dollhouse. He comes to me insisting over and over that he wants “shut”. I keep telling him “well shut the door then!” He stops and thinks, carefully finding the right words to venture out into the uncharted territory of explanation. “No Mom, I want the door open and the house shut.” This is one of if not the first time he has described something to further clarify his meaning.

A favorite book is missing one night. “Where is it?” I ask him several times, to which he continually echoes, “Where is it?” Realizing our dialogue is going nowhere, and the bedtime clock is ticking away, I try another tact. “It’s …….” I say. “Behind the bean bag” he finishes, in that “why didn’t you ask?” tone of voice. Speaking with Max I often feel the same way I do trying to write computer code at work. Text needs to be put in precisely in order for the code to run. I wonder if he has an MMX processor and a hard drive where his brain should be.

I begin pressing him harder for answers to my questions. I know now that he knows a lot of answers and doesn’t know a lot of question words. I turn everything into a question then use the fill in the blank format to get the answer. This is how he will learn our question words, I am sure. I ask him what each song that comes onto the tape is called while we are riding in the car one day. He has made up names for them all, based on the lyrics. We come to one he doesn’t know well enough to name. “What song is this, Max?” I press. He pauses for only a moment, and then tells me “it’s another song!”

I also do this with his reciting of media material. I ask him “what is that from? It’s from . . .” one day, mostly out of habit of asking, prodding him to stay on our planet. I am surprised when he answers, and after thinking about his answer I realize that he is truly telling me. My curiosity is piqued, so I ask him nearly every time his echolalic speech occurs. He answers correctly each time, though I truly don’t recognize its source until he tells me. I begin to recognize what triggers his speech, some event or utterance I have made which sends him to a logical, if not completely unrelated response. What a strange and marvelous creation his brain is, recording every experience with a URL link. I live with the World Wide Web in flesh and blood.

I expand on the fill in the blank method to help him master the much needed “identify your owies” skill. This has been a source of concern because, until now, he has been unable to tell us why he is crying. Several months earlier he came into the house from the yard screaming. Until then we didn’t know he couldn’t tell us where he hurt, if he hurt. After trying everything to calm him we finally made him sit in “timeout”, and he managed to calm himself. An hour or so later while I was washing his hair in the tub, I encountered a bump on his skull the size of a golf ball. In light of the knot on his head, my reaction to him must have seemed appalling. It was.

Our fill in the blank method succeeds first in identifying body parts, and later injured body parts. He bumps his head on the railing one day. I hear him begin the canned phrase we have given him for this. “Ouch my …” He thinks for a second, then finishes “hair!” Another time during our learning curve he stubs his toe while getting into his bed. “Ouch my jammies!” he mutters. Well, Rome wasn’t built in a day.

Lucky

Max begins using names when addressing people. I hear him talk to people, a wonderful small thing for those of us who have been with him since the beginning. “Carol, I’m hungry!” he says in hopes of persuading her that it is indeed time for lunch. “Here Mom, read Cat in The Hat on the bean bag chair, please!” Of course he learns quickly that the he is able to charm me this way.

As we approach the end of our second year in the three-year window with Max, again we face the thought of losing time during the several weeks of summer with only limited special services. I learn of a summer horseback riding program for persons with disabilities. Our application for Max is accepted. I am eager for Max to be involved in any outside activity that will expand his interests and provide opportunity for language. Bev, the COTA who has been working with Max, feels it will be beneficial for other reasons as well.

Over the past nine months she has worked painstakingly with Max to help him overcome his sensory issues and assist the inhibited development of his motor skills. Her ultimate goal of course is the small motor development associated with writing. However, just as in language development, in order for Max to attain this completely refined motor ability, he must work in the proper developmental sequence.

Like his speech, his motor skills had significant gaps that would make it nearly impossible for him to progress without help. When he began working with Bev, Max was a child who could walk and run, but not jump. He could stand, but had difficulty sitting without leaning. He could climb, but had difficulty maintaining his balance when stooping to pick something up off of the floor. His hands worked independent from one another. It took nearly two years before he established hand dominance. This was compounded by the fact that he rarely regarded his hands when they were operating, instead looking off to the side. Not only did the right hand not know what the left was doing, his eyes and brain didn’t have a clear picture of what either of them was up to. Like his language development, his motor abilities could aptly be described as Swiss cheese.

Working with a huge variety of materials that she carried in her mysterious bag, over the course of the first several months of work, she managed to help Max make great gains in the large motor areas of strength and balance. She worked with Max on a big bouncy ball, doing activities designed to help Max balance, and also to require him to catch his body by touching the floor with an open hand. Prior to this Max was quite aversive to touching anything with his palm, using the heel of his hand instead. Rolling the ball as he lay across it on his tummy, Bev was able to get him to touch first the smooth surface of the wood floor, and then the fibers of the carpeting with an open palm. He enjoyed activities such as these. Other things, such as the weighted vest she tried to get him to wear to compensate for the proprioceptive, “body-in-space” awareness that he lacked, were not as popular.

After many months, when his large motor development seemed to have evened out, she began working on the small motor areas. This was done in a precise sequence, first getting Max to use his hands together in activities such as stringing beads or using interlocking pieces. The activities she chose were always just a shade harder than it appeared he was capable of. When he grew tired she pushed him to do “just one more.” With each accomplishment there were new challenges. Somehow she was always able to keep Max moving forward, for the most part interested and feeling positive about his work. She never gave up, and to her credit, neither did Max.

Our first session at horseback riding goes impressively, swimmingly well. Too well, I should have thought at the time. Max allows Tracy, the instructor, to put him atop the horse, and is quite content to ride while his horse is led around the riding arena. Walkers on either side of the horse insure he does not fall, though this is only a precaution, so improved are his balance and trunk strength. At the next session, Max outright refuses to ride. I am able to convince him to try, but after only a few minutes he wants to get down. I can convince him otherwise for a while. I am pleased that he uses language under such duress. After telling us “You want to get down” several times, he becomes more insistent, saying, “You need to get down!” At that point Tracy feels his resistance is becoming dangerous to himself and the horse, and she helps him dismount.

We continue in this way for the next few sessions. I feel awkward, wondering what people think of my insistence that Max ride. They have no idea that only two years ago I had to insist even more strongly that Max participate in anything to do with the world of people. I try to briefly explain to Tracy about ways we continually try to engage Max, and the ambivalence I feel when he resists us. I’m not sure if I am making much sense, but I do see Max slowly increase his tolerance for being on the horse’s back. Tracy gets to know Max, and learns how to avoid potential meltdowns. I can tell that she really cares for him, and though she may not have the textbook knowledge concerning autism, she gets to know Max and what he needs. After the end of one session several weeks into the summer, she comments that he broke a record that day, riding for 45 minutes. Another time she teases him about smiling while he is on the horse, that he is not supposed to be having fun.

“Going to ride Theresa (his horse) with Tracy!” he announces on our way to horseback riding lessons one day. This horse, and a horse named Apgar, are the two horses he normally rides. “Theresa’s” name is actually Sharisa, but Theresa is Max’s great grandmother’s name and is more familiar. Thankfully he doesn’t say this within earshot of other family members. He still likes the idea of riding more than the actual ride, and particularly likes to feed his horse carrots that he brings from home when the lesson has ended. “Here horse, eat this carrot!” We have put together a new book to accompany this horseback riding experience. Carrots for Apgar provides Max some language for the apprehensions he feels about the horses, along with general vocabulary and description of the experience. At Carol’s suggestion, it also contains some social phrases he can appropriately use. While we can’t possibly give Max words for every situation he might encounter, it is nice for him to have appropriate phrases he can come up with easily. Like his initial reluctance to even try to make speech sounds, she believes he is reluctant to try socializing because he is not sure how. Giving him some phrases may help him to begin.

The riding activities are designed to help Max with strength and balance, and also to help him become accustomed to different sensory input. He hesitates to touch the horses’ hair, and is alarmed at the noises and the smells that the horses produce. He plays a game one day in which he is to pick an artificial flower from a vase on a barrel, then ride to another barrel and put the flower in another vase. While he is able to use functional speech with Tracy, the artificial flowers trigger a scene from his current favorite television program, The Big Comfy Couch. He sits atop the horse with a plastic rose between his teeth, saying, “I look good and I feel good.” Tracy and the horse helpers are puzzled and amused. Apparently they are unfamiliar with Granny Garbanzo Bean. He impresses them with his knowledge of words beginning with the letters that line the walls of the riding arena, telling the instructor “M is for monkey, C is for camel.” I am less impressed. The other onlooker, the great-grandmother of a child severely impaired with cerebral palsy comments at how verbal Max is. Casual strangers such as she don’t realize his speech is canned.

She tells me about her child, Billy, how she has been told by doctors and specialists that he won’t walk or talk. She says she just can’t give up, which is why she is here. I agree with her that if she did nothing he would certainly never walk, talk or realize what potential he has. Still she says, listening longingly at Max’s (canned) speech, she would give anything to hear him talk. I know the lay of that land; the wondering of “will he ever . . .” I tell her a small bit of Max’s history, of knowing about wistful watching. She tells me that she is Billy’s great grandmother, that the child’s mother was unable to accept Billy’s intensely demanding needs, that his care fell to her. She speaks without reproach of the physical struggles they have overcome with Billy, and those they still face. When she is finished talking I tell her how lucky I think Billy is to have people such as herself to care for him. She smiles and says, “We’re lucky to have him.” I look at her and see a kind old woman who has embraced a life she hadn’t planned on, a child who has taught her about love. Her simple and poignant statement touches at the core of our often-complex lives. Softly I tell her “we feel the same way about Max.”

Build Me a Castle

The pieces that have been orbiting around in Max’s mind come crashing together in a huge cohesive explosion. Sentences unfold from his lips that are his own, his thoughts and ideas alone now join the words of others he has been speaking for so long in a myriad of language. He plays on our neighbor’s deck in the small wee-go car. “Mary, watch me beep the horn (beep beep). I’m going to work now.” He drives a few feet to her patio door. “Bye everyone, I’m going to work now.” Another day we are riding home from daycare. “Mom, I’m going to have a peanut butter sandwich at the picnic table and watch the Comfy Couch, the Snickelfritz one.” He plans aloud in delicious detail. He begins answering affirmatively with the word “yes” rather by repeating the question. We go for a wild speedboat ride at the cabin, me clutching Max white-knuckled, Max wild-eyed and giddy. After the ride is finished I ask Max if he had fun. “Yeah” is his deadpan answer, as though I had asked him if his shoes were on the right feet. He has yet to add inflection to his answers. He crashes, bumps or is otherwise injured or upset, in tears. I ask him if he is OK. “Sure I’m OK” he tells me. He doesn’t understand why he is funny. He also learns how to nod or shake his head in answering yes and no. I assume he has learned this from the puppet, Molly, on one of his favorite television programs who nods rather than speaking. Being Max he has learned to imitate this action precisely. Unfortunately Molly of course nods with her entire upper body, as does Max. He looks like he has had a recent neck injury when he nods, but he does get his point across.

He experiments with humor when he realizes he can make people laugh. He learns a few jokes from a children’s song tape, and tries them out. One day he walks up to one of his teachers and says “A newspaper, silly! Ha ha ha ha!” Of course we all laugh, but not as he thinks because of his “joke”. He is much better at the less subtle types of humor, and has great fun while I try to convince him to take medication. I made a game out of it by taking the medicine first and making lots of puking, gagging, coughing noises as sound effects. He rolls his eyes, gags, wretches and coughs, laughing all the while. I’m not sure we get any more medicine into him this way, but at least he enjoys it more. He makes me laugh another day when the dog is barking in the yard. “Russell, stop barking! That’s rude!” he says through the screen door. Lynn has told him that spitting, shouting and a number of other favorite pastimes are rude. Apparently he has added barking to this growing list.

We go to the birthday party for our neighbor child at McDonald’s. Max announces most of what he is doing to anyone who will listen. “Mary, I’m going in the balls now.” “Mom, I’m going down the slide.” “I want the French fries now!” Some of his announcements have been cause for embarrassment, as he announces to a crowd after we exit a public restroom “Mom went pee!” During this party however, he fits in well with the other three and four year olds. After we leave the party a parent asks “Didn’t they have a child who is autistic?” Our neighbor Mary tells her yes. “Which one was he?” she is curious to know. I find this out later and am pleasantly surprised. Max will always be endearingly Max, but I am pleased that he is learning to blend.

I have read that astronauts returning from space can never view their world and their own lives the same way again. I feel this watching Max celebrate his own fourth birthday. His barely contained excitement as the guests begin to arrive, his look of enchantment as he blows out his birthday candles, the eagerness at which he opens and plays with his gifts. We have seen the world from a remote capsule in space. I still can’t believe we are here, that he has come to us.

He learns a few idioms that we have used to try and replace some of his less socially acceptable mannerisms. When he is excited or thrilled by something his entire body will tense and quiver. This will always be Max to me, but I worry that others won’t be as understanding. He picks up “oh my goodness” which he says when he is surprised, “oh man!” when his guy gets squashed on a computer game, and “oh my gosh” when he does something unexpected, like burp or knock his shoes into the lake. I hope that other more choice epithets won’t surface. I am only human, and his mind is a steel trap. We also work on expressions such as “I feel happy because…” One night he gets quivery after getting out of the tub. I remind him to use words. “I feel happy because I like towels!” he tells me. I love to hear about his emotions, even if they are only about liking towels.

He wants me to draw with him one night. This has not been an activity he enjoys; he struggles with the mechanics of the crayons and paper. I help him hold the crayon as he watches in delight at the pictures forming on the paper. He wants me to help him draw a helicopter with a guy in it, and a door. He adds to the picture another guy with pants, a shirt, shoes and a necklace. He puts the finishing touches on his masterpiece by drawing himself in bed with his sleeping bag, stuffed cat, Molly dolly and blankie. He makes sure everyone has feet. His Molly dolly is essential to the drawing, as she is his constant companion. He takes to bossing her around, telling her “Molly, let’s have some healthy food! How ‘bout sloppy Joes?” Or he puts her on the couch with his blanket as covers and tells her “You stay here Molly. I’ll be right back!”

He still has frequent episodes of echolalia and a general inflexibility in his thinking that affects his ability to cope. This is particularly true when we are invited by a family friend who worked for the railroad to tour some retired train cars. Max is compelled to act out and recite an episode of a Mercer Mayer story that takes place on a train, not once but many times over. It is difficult when the time comes to leave. Another day we go to an outdoor folk festival. I am not as interested in the festival as the free train ride which acts as a shuttle from the downtown parking area to the city park in which the festival is held. Max begins spewing dialogue from Green Eggs and Ham, “would you, could you, on a train?” He has a complete meltdown when the short ride ends, though he is able to regain his composure when we tell him we will ride the train again after the festival. It is hot and humid, so we don’t stay long. Max eagerly boards the train for the return trip and manages to keep a lid on his behavior. However, when the return trip is just as short as the previous ride, and he is extremely upset when we must get off. We march across the parking lot with a screaming Max in tow. Episodes like this make me wonder if we will ever help Max overcome the rigidity that causes him such difficulties. At the ice cream store that was to be the ending to a nice family outing, Max is not permitted to buy and ice cream. We have talked about it in the parking lot, that if he cannot get control he will not get ice cream. Now is the follow through. The cause of Max’s fury shifts from the train ride to the ice cream. I am determined that his poor behavior will not go without consequence. I think he understands this.

Near the end of the summer we are once again invited by the same friend to attend a train ride up the scenic North Shore of Lake Superior. We accept his invitation with a bit of apprehension. We talk to Max about going on the train with Mr. Tom, and when the big day arrives he is very excited. There is a long delay after we board the train, for another car is blocking the track we need to back up on to switch tracks. Once finally underway, the rain ride lasts for nearly two hours. We eat lunch in the small town that was our destination, where Max is invited to visit the engine car. It appears he will get to ride back with Mr. Tom and the train’s conductor, but at the last moment he wants to find me. Mr. Tom returns him to our seats, and the train leaves the station. It is then we find out that Max was only concerned that we were on the train at all, and he wants to ride in the engine car after all. But it is too late. The doors are already locked. He settles down in our place and enjoys the ride home. His behavior the entire day is completely appropriate. Practice does indeed make perfect.

In other ways we see him slowly becoming less rigid and fixed in his thinking. At our cabin in Wisconsin this is quite noticeable. The differences from year to year are quite dramatic, as we are only there during the summers. Two summers previous, when he was in the throes of his stereotyped behavior, he was drawn to the old screen door, opening it and letting it fall shut over and over again. He also was obsessed with my parent’s mini-van, spending hours in it’s interior manipulating the knobs and levers. In all of the time he spent in that van, of course he never once pretended he was driving it. Although one would never leave a two year old unattended outdoors in the woods of Wisconsin, this was even more true of Max. As he wandered around outdoors, we would follow him. We had no idea what enticed him. He had no idea he was being followed. This of course was before we knew what we were dealing with.

The next summer, when he was three years old, we had already been working an entire year on his behavior and language. Early in the summer we had put up a swing set, where we pushed him often. It was here that we played the nonsense syllable game. He had some purposeful play skills by then, and would play in the cabin with the Fisher Price little people house. His echolalia had just started to develop at that time. In a stroke of good luck, one of his favorite videos at that time was a Barney video called Camp WannaRunAround. It was at this time that we first saw Max lift language from one source and use it functionally in a setting of similar circumstances. We did not teach him this, but I have to think that all of our prodding him to interact and our constant efforts to make him communicate with us was in some way responsible. In any case, this development gave us many opportunities to expand upon and further develop his interests and activities. For Max was much more receptive to participating in activities such as swimming, fishing and other outdoor adventures when he could relate them to something he knew.

His increased connection to what was going on around him not withstanding, he still displayed a certain rigidity that was completely irrational. When we would try to go on a walk, he would be manageable until we attempted to turn around and return home. To him, turning around signified the end of the walk, not the halfway point. He would scream and carry on from the second we turned around until we got back to the cabin and he could be distracted.

It was also during the summer he was three that we discovered that he had the biological equivalent to a global positioning sensor. On our first trip of the season, as we were approaching one of the turnoffs approximately 50 miles from our home and 20 or so miles away from the cabin, Jim noticed a train which would be blocking the road we normally take. He decided to take an alternate route, and drove past the turnoff. Though Max did not have the words to alert Jim, he nonetheless tried to convey to Jim his mistake. He accepted our brief explanation about going to the cabin a different way. Though I had noticed his excellent sense of direction in town, he surprised even me. He was two years old the last time he had been to the cabin, and that was nine months before.

Now, during this summer he turns four. It is the summer of Andy, Apgar and Tracy. When he is not out trying to conquer the monkey bars, he is in the cabin playing with the Little People house, or the Lincoln Log cabins that we build for him. He also likes to play with the toy deer we purchase after a particularly successful outing to a Wilderness Walk park, where Max lets the deer lick corn out of his bare hands. In an effort to stem the flow of echolalia that continues to stream forth, Jim and I decide that the cabin will be a haven from any type of media except books. At this time Max is heavily into his Dr. Seuss thing. He is excited to return to the cabin after our three season hiatus. After we have been there for a few hours, however, he asks for a favorite video. We tell him it is at home, after which he asks for nearly every other video in his collection. Of course the answer to each request is the same. It doesn’t take him much longer to decide he wants to go home. After the weekend is over, immediately upon entering our house, we allow him to watch The Cat in the Hat. It takes him a few weeks to adjust to our “weekends without videos” policy, but Jim and I are both committed to this decision, and he is ultimately able to enjoy more carefree play without their distraction. This is another way we see him more able to adapt. He would never have survived without his videos even for a day one year ago. Or rather, we wouldn’t have. One episode during this summer reminds us that he has not completely left those ways behind. We are riding on the pontoon boat one day, when Jim gets unbearably hot in the sun. He asks my mom, who is driving the boat, to stop so he can jump into the lake to cool off. No one thinks to prepare Max for this event, and as Jim prepares to jump I happen to look at Max. I see the complete look of horror on his face too late to prevent Jim from plunging off the front of the boat. Max is ballistic, thinking the lake had just swallowed his daddy. Jim surfaces and returns to the boat, while Max processes his reappearance. We laugh, but all of us are moved by Max’s terror. During another boat ride Max needs to pee. Without thinking I lift him to the front of the boat, not realizing the panic he will feel. At least he has words now, and I am able to convince him that we are all staying on the boat.

He starts singing again, which has tolerated or participated in only sporadically until now. I first notice this when he is putting his shoes on one day, making a production out of it. I realize that he is singing the opening song from Mr. Rogers. He improvises with the lyrics, singing about orange sweaters and shoes and the closet, all of the things Mr. Rogers does while he sings his song. I realize that he understands now that singing has meaning. One evening we are all riding in the car home from the cabin. Max starts singing in the back seat “Shake Your Bootie” which Jim likes to sing to the kids. Max starts making up things to shake, including all of the members of our family. When he runs out of family, he looks out the window and sings “shake shake shake, shake your tree!” When that verse is done he pauses and sings “shake shake shake, shake your … other tree!” He later adds window, flower, and truck, along with various body parts.

It is one of the final days before the new school year will begin. The previous spring we decided to divide Max’s time between nursery school and Lakeview Montessori, to help him prepare for the more structured and adult directed world of elementary school. I spent a great deal of time visiting sites to find a program which I thought would meet Max’s needs. The nursery school he will attend is in our neighborhood, and has what I believe will be the right combination of structured expectations and free exploration.

Now, on this day, before the hectic pace of fall begins, I bring the children to the playground in our neighborhood. Several other mothers must have had the same idea, for the playground is bustling with activity. I watch Max playing and climbing. He looks into the faces of the other children, and even answers yes or no to a question or two which he is asked. I can’t recall the words he uses, but I know he talks to me as well.

The other mothers chat, while perhaps thinking to themselves what to make for dinner. A part of me is affable, exchanges banter with this collective group of mothers that surrounds me. Another part of me stands and watches, apart from the huddle discussing rummage sales and Kindergarten Round-up. Bits of an old song run through my mind as I watch. Anyone can tell you think you know me well, but you don’t know me. I don’t know where my place is with them anymore. Though I look like one of them I am not. I have been someplace they have never been. I’ve come back from the dead.

Max listens to a lullaby tape at night before he falls asleep. I actually play it for Alexander, who has recently given up his binky for sleeping. It comes on over the baby monitor in our room where Max likes to fall asleep at night. One night he asks me to sing to him, which takes me by surprise. He watches my face intensely, looks deep into my eyes as I sing. This singing becomes something Max looks forward to as part of our bedtime dance. He moves his fingers or his head, I realize slowly, to the rhythm of the music. He mouths the words with me, learning to stay in sync with the music. He starts singing with me, softly at first, then with more confidence. It is the first time we have shared a song together. He sings sweetly in his pure, innocent voice. I sing with tears in my eyes a song that tells the story of where we have been, where we are going, where we hope to be.

Down in the valley, the valley so low,

Hang your head over, feel the wind blow.

Roses love sunshine, violets love dew,

Angels in heaven know I love you.

Build me a castle, forty feet high

So I can see him as he rides by

As he rides by love, as he rides by

So I can see him as he rides by.

The Third Year (1999)

Black and White

Max begins to make connection between written letters, sounds and words. Like most things with Max, we seize his interest as yet another way to weave together this complicated world of language. He is absorbed with phonics computer games, and quickly learns the sounds the letters represent. He learns to read by sight all of the words in the games. He reads aloud other words while we are out and about, while I hunt to find where he sees them. For now at least his reading is based upon his outstanding memory, though I point out the letter sounds as well. He learns to evaluate language sounds, which leads him to rhyming and word patterns. He knows that changing the initial consonant of a word will change the sound and make it a new word. He sifts and sorts through the idea of written language, as if he instinctively knows that in this black and white print is a way to understand. I cautiously help him, not wanting to complicate his work. His vocabulary expands to include the words he reads.

One day at the toy store he finds a large stuffed dog that he feels he has to have. “Mom, I’m want to carry this dog!” is how he asks me to buy it. It doesn’t seem that long ago that I agonized over ways to get him to notice his world, so a toy dog he picks out and asks for in a toy store means more to me than the $18 price tag. We buy the dog. At home I ask him what he is going to name his dog. He is still hazy about questions such as these; it will take all of the imaginative power he possesses. He thinks a moment, and then tells me “It’s pet!” (a word he has learned to read). I try not to laugh at him.

Another day we are working on the computer. I am working on pronouns with Max, describing the actions of the characters on the screen with special emphasis on the “he” and “she’s”. In one of the scenes a mouse is eating asparagus ice cream and saying how gross it is. I ask Max what SHE is doing. He answers, “Mom, she’s grossing!” At least he got the pronoun right.

He has started at his nursery school, which is in session three mornings each week. The nursery school enrolls about 30 children, but there are three different rooms. Each room focuses on one aspect of development, for instance the “red” room houses large motor activities such as tricycles, climbing equipment, and a slide. The “green” room has manipulative objects, such as a sand table, along with many areas of pretend play, which at times includes a pretend grocery store; housekeeping area; and shoe store. The “blue” room has painting, play dough, markers, crayons and papers to do all types of art projects. Each room also contains additional toys, books, goldfish and other inviting materials. The children switch classrooms at set intervals, to get an opportunity to explore these different environments. Max is in a class of ten three year olds including him.

Near the end of the summer, we had an opportunity to visit his school before the fall session had actually started. The teachers were setting up materials and invited Max in to familiarize him with the setting. They are pleased to see him respond in so many more ways than he did the previous spring. A week or two later his classroom teacher, Linda, comes to our home. The staff at the nursery school spends the first week of school doing these home visits, to see the children in their own environment before meeting them in the potentially intimidating school setting. It is nearing lunchtime when Linda arrives, and after visiting for a few moments, both boys are hungry and asking for a snack. Linda comments as she leaves that Max is one of the more verbal children she has visited this morning. While I am glad this is true, I know that Max needs our help to continue constructing his language system and to develop social skills. It won’t just happen for him as it does for the other children.

Having spent the summer with Andy and the children at Lakeview Montessori exchanging three word “sentences” and playing interactively, I was not prepared for the change in behavior that his new nursery school must have triggered. I was dismayed when within the first week of school we saw him returning to the intensely echolalic speech, which had characterized the last year but had begun to diminish over the summer. He was drawn to the housekeeping areas, engaging in solitary play with a mirror as his companion. Dialogue from the television program “Arthur” dominated his play. He was reluctant to explore any of the variety of activities in the nursery school setting. This was true of his behavior at Lakeview Montessori as well. It was the first time we had ever seen a regression like this in Max. I was alarmed. Carol tried to reassure me that he is responding to a lot of new situations in his life.

The nursery school staff was unsure of how to best intervene to help him move beyond his present state. They were much more comfortable with a less direct approach, wanting to err on the side of respecting him as a person. This is most certainly what all of us want for our children, for them to be treated with respect for their individuality. It is a line that we faced often with Max, and for the most part succeeded in not crossing. The key of course is in determining when and how to intervene. Max was fortunate to have Carol, Bev and Lynn offering checks and balances, pooling their ideas, observations and intuition to help him overcome many such instances. Each of them was able to continually keep the larger picture in mind when trying to get Max to comply or expand his interests. Without this larger picture of why we were redirecting Max, the scene could quickly shift to a power struggle just for the sake of control. Not only is this inadvisable with any four year old, it also carries a completely negative connotation to the interaction. I have been surprised to discover that this idea does not occur to all who work with children, special needs or otherwise.

In this instance, with time Max grew more comfortable in his nursery school setting, and slowly some of these behaviors diminished. Fortunately, having been on this road with Max for some time, I at least have the confidence that though Max is not entirely focused and purposeful, he would indeed continue to learn and grow. In instances when he tries to be social with the other children, he will often speak gibberish. I am almost certain that he knows his speech should sound a certain way, but he is still unable to follow and transmit the rapid-fire words, which are necessary for conversation. He does this on the phone as well. Much like his echolalia, we give him the words that he lacks. And trust Carol when she reiterates that this, like most everything else, will certainly run its course. In time it does.

With fall viruses rampant, I am not surprised when he gets an ear infection. I am surprised though that he can now tell me of his ailment. “My ear hurts!” he cries. At the doctor’s office he is quite sick and dozes on my lap while we wait. Later we enter the exam room, where the diagnosis is promptly confirmed. Max is lying on the exam table while the doctor writes the prescription. When it is completed I ask Max if he is ready to go home. “No, Mom, I’m sleeping on the doctor’s bed” he answers, then rolls over and goes to sleep. I think he has always thought in such black and white terms we are now hearing.

He touches his private parts one day in public. I ask him what he is doing. “I’m itchy!” I think perhaps it is his inner thigh or some other more socially acceptable public scratching body part, so I ask, “What itches?” “My penis!” he announces. I guess that is what I get for asking a stupid question. Another day I hear him getting the milk bottle from the refrigerator and race upstairs (too late) to belay a mess. I find a large pool of milk slowly migrating to the underside of our dishwasher where the floor has a gentle slope. In the middle of the puddle is a small sodden Kleenex, a testimony to Max’s cleanup efforts. At that moment I have little appreciation for his good intentions, as I hurriedly take off the front panel of the dishwasher. Though I know that crying (or in this case scolding) over spilled milk is fruitless, I scold anyhow. Max starts a fake cry, a perfect imitation of the baby sister on one of his favorite television programs. This does little to improve my mood. “I don’t want to hear baby Kate, I want to hear Max!” My harsh words are the result of more than frustration over the milk. At times I still get lost in the trees of our journey with Max, and don’t see the large section of forest behind us. This is one of those times. Max stops the fake cry, and says in a small voice “I’m sorry Mommy.” My irritation is melted by his voice, and I take him in my arms. “It’s OK that you spilled, but when you pour you have to ask a grownup for some help, OK?” He looks into my eyes and asks me “Grownup, I need some help pouring milk please!” I don’t k now whether to laugh or cry.

All Through the Night

There is a Halloween parade at nursery school. Holidays such as this are nice milestones to remember where we’ve been. This Halloween Max has chosen his costume, a character from the popular if stupid television series Telletubbies. My mom makes the costume which Max eagerly tries on. He stands in front of the mirror, admiring his transformation. I can’t help but see another type of transformation, one that happens slowly, imperceptibly before our eyes, but is most obvious from the distance of one year’s time.

He sits among the costumed children listening to the guest storytellers. I’m not sure if I am photographing his costume, or the other more subtle alterations I see. The stories are long; he is not the only child getting restless toward the end of the presentation. He stands up and though I am not near I assume a teacher has told him to sit down and listen. I hear him tell her loudly “I can’t listen!” I think to myself as the presentation ends that yes, you can Max, and you do. You can listen and understand and think and tell. Maybe not as well as you should, maybe not exactly like everyone else, and maybe not all of the time. But you can and you do, and for that I will never stop being grateful.

Other seemingly commonplace incidents don’t go unnoticed either. Max’s motor skills have gone into the refinement phase. We came from the night of a not too distant past where Max could not even use both hands together. He removes the cover of an empty shampoo bottle in the tub one night, his fingertips and thumb delightfully working together to grasp and turn, while his “helping” hand holds the bottle steady. He fills the bottle with water, replaces the cap, and gleefully squeezes the water out at his brother. Another day we are at the pizza restaurant. I casually watch Max with a lovely three point grasp delicately spearing his pizza. Only someone who has seen the night that lies behind us knows the complicated and difficult motor acts that are occurring. It is more than it seems, this bottle and this fork.

Bev continues her work, and as the fall months clip by, he begins drawing figures. Initially they consist of a head, arms and feet. Like his words, looking at something Max has created on paper is another link to him that most parents take for granted in their children. I look at his stylized self-portrait hanging on the bulletin board in his classroom with pride. Bev also works with scissors, which is the most complex of all the motor acts she will help him to accomplish.

At the age of four, he is finally able to participate in formal academic testing. In both his small motor and language development his abilities span a broad range of age equivalents. The things he lacks, such as the motor refinement necessary for writing and cutting, place him at a developmental level of 3 years 4 months. This is true of his language as well, which still lacks in fluency. There are other areas where he has skills closer to age seven. He is able to reproduce several complex block configurations precisely. He scores extremely well on a test involving receptive vocabulary. I am not surprised, for the test includes mostly concrete terms. Carol explains to me however that the results often correlate closely to subsequent I.Q. scores. I am pleased with his test results. Even so, I tell Carol that I wish he had just turned three instead of four. The best way I can describe his language is formatted rather than fluent. She has pointed out that sometimes brain development in children even ages six or seven will continue the rapid rate we see in early childhood. This would extend the window of opportunity for Max to achieve fluency. I know I can’t count on this, however. Though Max has come a tremendous distance in the two years we have worked with him, I feel more than ever the sense of urgency to fill in what is still missing.

As Christmas approaches the talk in our home revolves around Santa Clause, Frosty and presents. He has run the gamut of video collections in the past two years. His current favorites are Christmas stories, particularly the several variations and sequels that exist about Frosty the Snowman. When we first watch Frosty, I sit on the couch with one child on either side of me and augment the story so that Max understands the plot. It is really the first time he has been able to follow a plot as such. Elements of the plot such as what motivates the characters and why they act as they do are ways I try to expand his reasoning ability, which is only in its infancy. Carol has been working on “why” and “because”, which Max is able to relate to immediate circumstances. Up until this point when we attempted to ask “why” even to model an answer back, he would shout “because why because” which he copied from a video he had seen. I hadn’t known how we would break him of this response, and am glad that it seems to have extinguished itself.

Max tells me he wants Santa to bring him a baby doll with a bottle and a cradle for Christmas. It is the first Christmas gift he has ever asked for. He decides this without wavering, without suggestion. He asks every night to go to the mall to ask Santa for his doll. Finally we relent and buy him a small doll to tide him over. Christmas is still six weeks away. We end up becoming regular visitors of Santa’s. To this day I carry in my wallet a picture of Max sitting on Santa’s lap, his beaming smile made even larger by the red Kool-Aid grin he wears above his lips. Another shopping day Max asks Santa for a baby sister. Had I known Santa was listening I would have paid more attention to what Max was asking for.

Glimmers of invention pepper his factual nature. I first see this when he invents an illness. This drama is complete with the weak sounding “I’m about to puke” voice telling me he was sick and needed to sleep on the couch (nearer to the card game we were playing with Grandpa and the Uncles). Another time he truly is sick, and when I ask him what hurts he replies, “I fell down with the chicken pox!” I try to bribe him with candy and movies so I can cut his hair. He agrees to the haircut, but when I get him situated in the dreaded haircut chair he cheerfully tells me “uh uh Mom, nooooo scissors!” I guess I should have made scissors a condition of the haircut. We also invent words to songs. I start this with him wondering how he will react. Back in the night of our not so distant past I still can hear the screams of a child who could not tolerate singing of any sort, let along playful, inventive singing. I am in the kitchen one day when I hear him singing in the bathroom. It is a song we have taken from Brahm’s melody, originally a lullaby. He sings

Lullaby and goodnight, pee is softly around you

As your dreams turn to sleep in a melody of pee,

Lay thee down now and rest may your toilet be blessed

Lay thee down now and rest, may your toilet be blessed.

We have lots of versions of this song, but I must admit this is the most original. As I reflect upon our Christmas together, I prefer to remember a song that we’ve mercifully left intact. I think as I sing it, looking into Max’s huge liquid eyes, I have sung this song to him from the beginning. I sang it to the infant and baby, and sang it silently to the remote toddler who could not listen to it’s sound. I sing it now, this Christmas, believing the words will carry us. They already have.

Sleep my child and peace attend thee, all through the night.

Guardian angels God will send thee, all through the night.

Soft the drowsy hours are creeping, hill enveiled in slumber steeping,

I my loving vigil keeping, all through the night.

While the moon her watch is keeping, all through the night.

While the weary world is sleeping, all through the night.

O’er thy spirit gently steeling, visions of delight revealing,

Breathe the pure and holy feeling, all through night.

The Phoenix

There is a fire in our home, the result of our two-year-old Alexander’s attempts to make toast with a battery. No one is injured, but the residue of burned battery creates toxic dust that must be cleaned. We are relocated temporarily to a hotel suite while professional cleaners scour our home. This, the death of my grandmother, and the discovery that I am pregnant with our third child is the tumultuous way we begin the end of a millennium. I keep no journal of these events, I realize later as I try to piece together the end of our story. For I don’t realize until much later that the end of this century is also the end of the story I began on a day much like this one. A day when we were told that our child had a disorder that may prevent him from participating in our world. A day when I was told that what happened with our son until he reached the age of 5 years would greatly affect the rest of his life. A day when words like “intervention” and “outcome” did little to dull this terrible blow. A day when a different kind of biological clock began ticking within me, measuring minutes in the days that we had before a 5-year birthday, still 3 years away. The first of many days spent insisting that this child of ours interact, first in his world, and much later in ours. The tears of loneliness and frustration belonged to those nights. The days could not afford them. This story indeed began on a day like any other. On that day the story lay in front of me, an endless ocean which now in disbelief I realize is at my back. On that day I was surrounded by the ashes of what I thought our lives should be. I could not know of the phoenix that in this final year would raise his wings and fly.

Grass and Snow

In our teaching with Max we have learned that while he is moving to a new developmental step he often processes, and deals with his learning stress, in rather annoying ways. He will fall back into unproductive behavior (like reciting or other non-functional speaking), or become focused on something specific to the point of obsessing. We have confidence now that this learning curve is finite, and that generally it will be followed by a major advance in some skill we have been practicing. I see this trend continue into our winter. When he obsesses about riding the elevator and going to the gym at Carol’s school, or when we get caught in a spiral of Max testing the limits of my patience with his quiet brand of defiance, I remind myself that good things come to those who wait.

Max begins to use some verbal reasoning and questioning skills. It has been this abstract language that dogs him, yet higher-level communication is full of these demands. I see him begin to attempt to reason aloud in an exchange during church. Max has become familiar with our priest, Father Fider, and looks forward to seeing him during the mass. We have attended mass only sporadically for much of the winter. When we begin to attend more regularly, we see more of the other priest at our parish, Father Brian. Max tries to sort out this “two different priests” idea during the mass one Sunday. “Where’s Father Fider?” he asks me several times. He is on the verge of whispering, though not quite. Since “I don’t know” is not something he relates to, and I indeed did not know where Father Fider was at the moment, he persists in questioning. Finally I think of a response he may relate to. “Father Fider went on a trip” I tell him. He processes my answer for a moment, and then abandons the whisper voice to announce to me (and all others within hearing distance) “Father Fider went to Camp Snoopy!!” Thankfully most parishioners are amused. At home he continues over and over on this “Father Fider was gone. It was a new Father Fider” vein. I feel I must respond in a meaningful way, to try and expand on his communication and keep it functional. His repetitive commenting is to me only one step removed from echolalia. When I can’t think of any additional response I tell him “you already said that.” He takes me by surprise when he considers what I have told him, and then makes the comment “He had on his church necklace.” I realize he is talking about the crucifix that hangs about his neck. I simply agree.

His tendency to perseverate, or talk a topic to death is not limited to church. I fix Hamburger Helper one night for dinner and make the mistake of telling Max it is macaroni and cheese. He is nearly ballistic when he sees that it is not at all like the macaroni and cheese he is expecting. For weeks after this incident, whenever I am preparing dinner, he will launch into a torrent about how he doesn’t want brown macaroni and cheese, that he likes yellow macaroni and cheese, and he doesn’t like the macaroni and cheese with the meat in it. I get to a point where I will tease him, asking him if he is sure, does he really want yellow or should I make brown. He answers emphatically and launches into his tirade once again. I guess when you are four, macaroni and cheese is serious business.

The “where is Father Fider” conversation is not over either. In the ensuing weeks Max is compelled to comment often during the service regarding which priest is officiating. The day the bishop visits our parish gives the morning an unexpected spin, and Max now has to wonder aloud (repeatedly) where is Father Fider and where is Father Brian. To this I have no satisfactory answer, for they both can’t have gone to Camp Snoopy. I try to simply give him the facts, that we are listening to Bishop Schweitz today. Having no part of my simple explanation, Max finally solves this problem (loudly) when he announces, “Bishop Schweitz is a new Father Brian!” He completes his announcement noting that this “new Father Brian is wearing a dress with a hat!” and that “she has a cane!”

The practice we have done in church pays off at my sister’s wedding. Both Max and Alexander are ring bearers, opposite the groom’s twin nieces. I have my doubts, but she and her future husband and are not concerned with pomp and circumstance, and simply want the day to be memorable. I can pretty much guarantee that with my children in the wedding party it will be. As her Matron of Honor I will be able to guide the children through there roles. At the rehearsal I tell Max he has to walk slowly up the aisle to bring the pillow he is carrying to Auntie Barb. His version of slow looks more like slow motion, much like the lead character in the 1970’s television program The Bionic Man. He still struggles with those invisible boundaries, particularly in new situations. I am concerned about the attire, having flashbacks of Max running through the portrait studio in his black socks and white underwear. Between dressing up, posing for pictures, and performing in church, our weekend looks completely booked with things on my Top Ten Things I Most Dread Doing With Children list. Throw in a few dinners at restaurants to visit out of town relatives, and I believe we have hit on all of the things in my life that are guaranteed to bring on a peptic ulcer attack. Thankfully I only have one sister.

The morning of the ceremony we manage to wrestle both boys into their wedding attire, and me into my formal gown. Apart from the blackened eye Alexander gave himself wrestling the dryer door for his favorite blanket we could almost be wedding party material. Pictures before the ceremony go smoothly, though if anyone looks too closely they will notice the death grip I have on Max’s shoulder during the group shots. Finally the big moment arrives. I have told Max that he is to bring Auntie Barb’s pillow to the front of the church, and then we will have cake. The processional is going along smoothly, with the little nieces a picture of perfection as they solemnly perform their flower girl duties. At the correct point in the music, I release the boys to perform their part of the ceremony. Although they begin well enough, by the time they are a third of the way down the aisle, the pace has picked up considerably, such that little Alexander is running to keep up with Max. Having been instructed to bring the pillow to the front, Max is none too thrilled to abandon his mission before reaching the altar. Grandma does a handy corral move to get both boys into the pew, at which point Max asks loudly “Where’s the cake?” I guess one can never be too specific with instructions.

Gender and tenses continue to be a source of confusion in Max’s language skills. Yet they are essential for anything beyond the most rudimentary conversation. We slog on. I try to suggest to Max before we see a teacher or friend what he could say, as a way to introduce some basic conversational skills. One of the new developments in his life is his sudden passion for the shower. I am amazed and pleased that he is open to such a sensory stimulating activity. I am less thrilled with having a constant showering companion, particularly in light of the fact that in the coming months of my pregnancy the crowding will not improve. At any rate Max is a “showerer”. I discover that this doesn’t work well as a conversational topic, however. Max, still struggling with pronouns in combination with tenses, walks into his Carol’s office one afternoon and boldly declares, “You took a shower!”

It is difficult to work on these more advanced language skills when I do not have a clear picture of what goes on during his school day. Up until now I have been involved in most aspects of his life. This has enabled me to successfully figure out what he is talking about so our circles of communication are complete. Carol had anticipated that communication might become more difficult as I have less information with which to work. To remedy this problem, Max’s educational assistant Dale writes in a notebook the events that occur during the school day.

In this way I can ask Max questions about his day that I know the answers to. If he is unable to answer I can give him choices, confident that one of the choices is indeed the correct answer. I am slowly able to move away from the choices, and use the fill in the blank approach, which worked so well in teaching him the question words. I also discover that helping him to recreate the scene in his mind helps his formulate an answer. For instance, if he cannot answer what story his teacher Linda read that day, I will ask him if he sat on chairs or on the rug for story time. This seems to get him thinking, and then I am able to say “And Linda read about…” and he is able to provide an answer.

His interest in the computer is renewed when we get some new software. There are several games which teach phonics and I am surprised one day when I am watching him to see that he has learned nearly the complete phonological system for decoding words. I watch him as he chooses between two unfamiliar words, and can tell that he is listening for the beginning and ending consonants to make his choice. He is also able to choose beginning and ending consonants to complete the spelling of a given word. He does not have to be taught that the written word has meaning. While we wait at the drive through of a fast food restaurant one evening, he regards a billboard with the word “de-icer.” He says outloud “c - r” spells “car,” “wait in the car!” He also learns a few prepositions from these computer programs, though that is not the intent of the game. Initially he says “by your next to” which evolves to “next by” until finally he is able to use “next to”, “by” and “alongside.”

It just becomes more evident that he is truly thinking the words he is saying. His manner is clipped; his words don’t flow in a steady stream. I am certain that most of what he has assimilated in his echolalic period has been broken down and assimilated in a meaningful way. He finally speaks in words that make up sentences, rather than in sentences that represent ideas. This is obvious when he retells books off of our shelves which I have not read to him frequently, but which he must have heard at school. After finally passing through a phase where he could recite a 60-page book, I am thrilled to hear him retell The Poky Little Puppy in a few three and four word sentences that are his own. He still acquires new words and phrases from the books he hears at school. He sees a girl on television crying, and tells me “Mom, she’s so very very sad.” A few days later I encounter this phrase while reading The Snowy Day to him and recognize where he learned it.

I feel like a dentist, constantly probing and picking at his language system. Searching for cavities that need to be filled, trying to equip him with the complete picture of how we think and express ourselves. I realize he still thinks in quite literal terms when I am giving him medication for an ear infection. I hand him the small medicine cup and tell him “this is for your ear.” He looks a bit baffled and tells me “I want to drink it.” I’m glad he spoke up, anyhow.

I find though that he can verbalize beyond what is here and real. We are sitting by the whirlpool of a hotel suite. Max makes a comment about snow, which I take as something “off topic” he is thinking about and can’t express fully. After several moments the automatic timer for the whirlpool bubbles runs out, and the water calms. I realize that his talk about snow is a comparison to the white foam in the whirlpool water. He stares into the calm quiet water green with chorine and tells me “now it’s like grass.” Grass and snow are how seasons are measured in Minnesota. I am more and more certain of the grass beneath the snow.

Vertigo

Moving from winter into summer is typically a long drawn out affair in Minnesota, and this year is no exception. Much of what is spring on the calendar is really just the end of winter. Then suddenly, in one morning it seems, grass becomes green in patches, and the brave crocuses are joined by less foolhardy spring flowers. So it is also with Max. The language and fine motor work of winter seems to linger into these months.

Our family plans a trip to Camp Snoopy, an indoor amusement park that we have visited a few other times. Such pilgrimages call to attention the changes over the past year and lift me out of the doldrums. Getting off of one ride and moving on to another has been difficult for Max in the past. During our visit (and from then on) it is as though this was never a problem. We all walk together from ride to ride laughing and talking. I must have thought to myself I would remember that evening forever. Because it was so ordinary, it was extraordinary. Max buckles Molly (his rag doll) into the seat of the Ferris wheel and holds her hand so she won’t be scared. I hold him tightly around his small shoulders. Part of me wants to hold onto this moment, his starry eyes and giddy smile. Part of me is terrified to lose him. I have seen him on the edge of a yawning abyss. Come away from the edge, I repeat silently in my mind as I grip him. I couldn’t bear to lose you now.

We make a coloring book out of line drawings of different amusement park rides, with text about our trip. Fine motor skills such as coloring in the lines are still a challenge for Max. He is very excited about the book, although not particularly the task involved. He also answers questions about his trip and the hotel we stayed at. When his nursery school teacher asks what he did, he answers, “You jumped into the pool! You went underwater!” He still refers to himself as “you” when he speaks in the past tense.

He enjoys his nursery school class and even begins talking with the other children. He learns to read all of their names. This I discover during a Valentine activity when he puts valentines for all of his classmates in their respective valentine bags. There are photos on each bag, and while most of the children are putting the written name with the face, I see Max doing the opposite. I remember thinking that whichever road Max is taking, it will get him to where we are going.

He begins greeting the other children, and is quick to point out when someone is not there. In the car on the way to nursery school one morning he tells me “Emily is going to clown nursery school.” He used to call it “clown school” which he learned from a television program. I had pointed out several times that it was nursery school, so he resorts to calling it “clown nursery school” to humor me. He says this in a teasing voice, wanting me to correct him. He continues talking. “She’s all gone with the chicken pox. She got better.” He has sought out this little girl in his class, smiling at her and even hugging her. She has been absent with the chicken pox, but is supposed to return this morning. We arrive at school, and Max scans the room to find her, but she is not there. He looks sad. As he is taking off his coat and boots, Emily arrives. I whisper to him, “Max, look who’s here.” He turns to her and says “Oh, hello Emily!” One of the teachers in the room quietly suggests he could ask her to play. “Emily, you want to play?” he asks. His delivery is shaky as the cadence of his speech is still off and his body language and eye gaze are not well timed. Perhaps the little girl notices, or maybe not. They go into the housekeeping area of the preschool room, where I here him say, “I’ll make supper.” And though Max is not able to sustain much more conversation, it is a beginning.

His ability to read outpaces his other language development, which causes me concern. When he reads aloud, I try to tag on some meaning to what he is reading. He mimics my vocabulary explanations, though I wonder how effective they truly are. “E-N-T-E-R spells enter, where you go in,” he proclaims to the grocery cashier. “O-U-T spells out, where you go out!” is his next declaration. He appears clever to those around him, but I fear he is memorizing again, “chunking” as we used to call it during the days when he would spew entire books and video dialogue verbatim. The day he reads “Pizza Hat” instead of Pizza Hut something causes me to pay attention. As I look at the Pizza Hut logo I realize it does look like a hat. Though he still likes pet phrases to pair with his reading, I am more confident that he is understanding it’s meaning.

Our Alexander falls on the stove and receives serious burns to his hands. Looking back as I write I must emphasize that Max’s story does not occur in a vacuum. His story goes in its course shaped and molded by the family it is played out in. We all have lives that are separate from and at the same time a part of this other life. This thing happening among us, this one person’s story of how he became who he is. The burns heal with time and guilt and bandages. Lots of bandages. We all have a story going on here. The one I am writing just happens to be Max’s.

So we inaugurate the reluctant spring by riding bikes on the sidewalk, hunting for Easter Eggs in near hurricane force winds, and going to the I-Max Theater to see a movie about whales. In the mornings Max comes to the side of the bed and whispers, “Mom, I want to snuggy.” In these groggy early morning hours Max presses his warm little body up against my growing belly. And I sleepily anticipate the spring of Max’s fifth year much like the spring outside of our window. The slow melt has begun what will be a torrential thaw.

From the White Cup

After what seems like an endless wait, our flirtatious Minnesota spring launches into summer. The heaviness of winter and the bleary spring skies lift. There is a certain feel to the day when I wake up and breathe the new summer air. Such it is with Max, who delights in a summer world of crossing the monkey bars, swimming and fishing. He also develops a passionate liking to the television program “Blues Clues”. It is a program about a dog named Blue, who leaves clues around for the main character, Steve, to help him figure out the answer to the episode’s question. Steve carries a notebook around to record these clues. Max begins to carry a notebook around, and I am not surprised to see him drawing, verbatim, what he has seen on the program. Another manifestation of the videographic brain I often forget he houses. I am pleased though that his sudden interest in writing speeds along the pre-writing skills we have worked on for so long. He tells me about his pictures, most of which are replicas. After drawing together for a while one afternoon he shows me his work. One picture he tells me about is an exact replica of the house, steps and fence we made out of blocks earlier that day.

He begins initiating dialogue with strangers. He is out on the sidewalk one afternoon riding his bike when a woman walks by. “I’m riding the bike!” He tells her. She probably did not remember he said it ten seconds after she had walked by, but I did. Another time he sees some older girls riding in the street. They are wearing bicycle helmets. “Mom, I need to get my helmet, to keep my head safe,” he calls to me. We are at the checkout area of a discount store one day. Max is standing next to the metal hanger that suspends the plastic bags for the clerk to pack merchandise into. It is right at his face level. He looks at the clerk and tells her “I’m going to sing a song now!” He proceeds to sing into the apparatus, which he pretends is a microphone. She makes a joke about karaoke, and though I’m sure he does not know what that is, he laughs and sings some more. He also announces to the clerk or anyone else standing in line what he is buying. He selects Cookie Crisp at the grocery store one day, a cereal that may as well be called I’m Feeding My Kids Pure Sugar For Breakfast. He must have seen it on television, for it is his mission from the moment we enter the store this day to find it. Once it is in his hand, he is reluctant to give it up to have it scanned. “I’m having Cookies For Breakfast!” he tells anyone who will listen.

His language is intact now, for the most part, which brings him fully into the world of his peers. He begins learning board games, though only the most patient playmates are involved in this learning process. I watch as he plays with his five year old friends at preschool. All of the children are around the table. There is one boy in particular whom everyone wants to sit next to. Max is sitting in the coveted place when another child, who until then has had a place on the fringes, asks him “Do you want to trade chairs with me?” He says it in such an inviting voice, and I bite my lower lip as I watch this mini-drama unfold. I hear the preschool teacher say to herself quietly “don’t do it Max, don’t trade.” Max trades spots. A second too late, as the other child takes the coveted seat I see Max sadly say, “I don’t want this chair.” He realizes he has been edged out. He has become a part of what was called on one of his educational plans a “peer group”. He is matter of fact about his new belonging. “Go away.” He tells Alexander “I’m playing with my friends.” This world of five year olds can be treacherous, though I know I must let him join. It is bittersweet to watch him go.

We have a party for Max’s fifth birthday at preschool, as do most of the other children on their birthdays. We cater this fine event compliments of McDonald’s. The tables in the lunchroom are crescent shaped, such that two of them put together leaves a space in the center of what becomes one oval shaped table. It is this center space where the birthday child eats lunch. The cups at preschool are red, all except one, which is white. The children long ago determined that drinking out of this singular white cup is an honor reserved for the birthday child. We have similar rituals in our adult world, though we cover them over with fancy terms of prestige. During Max’s birthday party at preschool, and for many days thereafter, he talks about sitting in the middle and drinking out of the white cup. It is for this we have worked so hard to build language and sociability into him, piece by piece, layer after layer. For better and for worse he is learning values and social rules from a group of people who will impact him from now on - his peers.

The Tummy Baby

We have many discussions regarding anatomy. This is most likely the result of my overgrown abdomen. Delivery of our third child can’t happen soon enough. We discuss in detail who has a penis and who doesn’t. More details are added to these discussions, details gleaned from the impossibility of modesty during the 39^th week of pregnancy. So far no one has thought to ask how the baby will get out of my tummy. Nor have they asked how it got in. One and the same answer, though I am relieved I won’t have to provide it. I realize that he has felt the baby kick, and his initial alarm over this experience has found a new outlet. Max has taken to pretending all of his dolls are kicking each other. I try to explain to him that kicking is not OK, even with dolls. His fascination grows, as does my belly. Soon not just Max and Alexander, but all of the children at preschool begin to pretend to be pregnant, with the variety of balls on the playground.

The day arrives when my own body can no longer manage the physical stress of this final pregnancy. I am hospitalized for my own well-being, and in the course of treating my symptoms I begin laboring. A few hours later our beautiful baby Greta joins our family. Shortly after she is born, the boys come to see the baby and me. Max sees me in profile and exclaims in astonishment “Mom, your tummy baby is gone! She’s a sister baby now!” This is the first of many discussions we have involving Greta’s birth, which are finally pared down to comments such as “Your baby came out” and “She’s not in there anymore”. Of course breast-feeding adds a brand new anatomically fascinating topic for discussing, in and out of our home.

Max becomes my self appointed helper, throwing out diapers, fetching burp rags and holding Greta’s binky in her mouth during rides in the car. He of all people could not anticipate the reality of my pregnancy and the nurturing feelings that a baby inspires. He is enamored with this tiny infant, protective even. He tells his grandmother “That’s Mom’s baby. Give her back.” I find blankets covering her where no blankets had been. When there is not enough diapering of the real baby during an afternoon I find diapers on the beanie baby kangaroo and a small teddy bear. Max helps me to dress her, talking baby talk to her as he has seen us do. She smiles and coos, delighted with herself and her brother. He beams back at her and tells me “She’s looking at me Mom. She smiled.” I look at Max then, and for just a second see again that little person locked in a world without looking, a world without smiling. I remember in that instant the first time that little child touched baby Alexander, how he recoiled from the touch, not realizing until that moment that the baby was alive. I remember a little boy who did not know how to reciprocate love, warmth and affection. I have read that the intervention of very determined parents can sometimes bring a mildly autistic child out of his shell. Is that what we have done here? I only know he is here now, helping me care for a baby with whom he has fallen in love. I kiss him lightly on the head and answer, “It’s because she likes you.”

To Do With You

We begin our fall back at nursery school with eager anticipation. When school ended last spring Max was just beginning to develop the vocabulary for discussing future events. In discussing his next school year I had used many specifics, such as who the teacher would be and which classroom his locker would be in. Several times over the summer Max had requested that we drive by his school. He would repeat what I had told him until finally I got the sense that he understood an idea of the future. This, and a better grasp at explaining what he is retelling about a past event are the next goals we look to accomplish. Staying on topic and speaking in turn are also areas which nursery school will help to refine.

We have a few snags during the first week of school concerning Max’s bussing. While the details are being worked out, I pick him up from school. Dropping him off at daycare poses a bit of a problem, as I don’t want to show up and disturb Alexander’s equilibrium. Dropping Max at the curb to be met by an adult there seems to be the best solution to this temporary dilemma. This means though that Max must ride in the front seat, as the back doors of our vehicle can’t be opened from the inside. Max is surprised to see me when I come, as he was prepared to ride the bus. I tell him that he won’t ride the bus today, but he will get to ride in the front seat. This is not something he normally gets to do. “In that white truck, over there?” he asks, not believing his ears. Later while he is beaming in the front seat, he looks over his shoulder and tells me “There’s the back seat.” I reply, “Yep, there it is.” “Right back there,” he tells me. “You’re right,” I answer, trying not to laugh at him. He settles back into his seat sighing, and says, “I’m so lucky!” “You sure are,” I tell him.

“What are we having for snack, Sarah?” This is Max’s favorite question to ask, though he already knows the answer. Later it becomes “what are you going to be for Halloween?” even long after Halloween time is done. As Max tries to develop his conversational skills we endure a barrage of these repetitive questions. We know he is building a bridge with what he knows, and we provide the missing pieces. “What are we having for snack, Max? Come let’s read it together,” his teacher Sarah answers. Later she points out “Halloween time is over Max. What are you going to be when you grow up?” These are ways that Max continually learns to think “outside of the box”. Sarah points out that another child in the room said he wanted to be a cook when he grows up. Max adopts this answer as his own. “Mom, I want to be a cook when I grow up,” he tells me. When I ask him what he is planning to cook he tells me “Dinner.” Alexander informs me that he is going to be a guitar player.

There is a designated “special person” at nursery school each month. This person gets to display a bulletin board about themselves, and also gets to be the “line leader.” After reading time the special person taps each child on the shoulder indicating it is time to put away reading rugs and get ready for dismissal. Max anticipates the day when it will be his turn as the special person. “When I’m the special person I will be the line leader and sit in the yellow bean bag chair. I will tap myself lightly on the shoulder and put my reading rug away.” In this way he begins to talk more fluently about future events. He also begins talking about the past that he can only imagine, that of his infancy. “When I was a baby I sat in Greta’s carseat. I sleeped in a crib. I wore diapers. I drank milk out of your breasts.” His explanations are factual, precise and very much tied to life in the here and now. He tells me one day “Anne is the line leader.” It is not a name I recognize from his class, so I ask him “Who is Anne?” He thinks a bit, and then tells me “Anne is …. Anne!” I try again. “Which room is Anne’s locker in?” I ask. “In the green room.” His answer confirms that he is indeed talking about a different class. With his impeccable memory he can retell most events and details about life at nursery school. He will tell me which shape of cookie each child chose, or how many; what play item of food each person pretended to buy in the mock grocery store; which classroom each child’s locker is in along with the names of their brothers and sisters. He still falters with these open-ended types of questions, and I can see that his language needs more polish.

Though Max’s skills at conversation lag behind his desire to converse, I am pleased. I can eventually teach the “how.” It is much harder to teach the “want.” He becomes awestruck by the new cantor at our church. She has a beautiful soprano voice, which initially worries me. On some of the higher notes, Max looks at me and says, “Uh oh, it’s getting kind of noisy!” He knows he is funny as we giggle together in the pew. Later we have the opportunity to meet his “beautiful singer lady”. He is thrilled and intimidated by this brush with fame. He stands in front of her, stage struck, unable to speak. His temporary muteness is completely unlike the silent child who neither looked nor responded to others. His absolute shyness is precious in its awkwardness. The cantor is patient and I think a bit flattered by her five year old admirer. Finally after beaming at her for several seconds, he blurts out “I had a birthday!” The conversation seems to be launched but for Max’s persistent loss for words. He stumbles through the obvious “how old are you question”, and then loses his nerve completely. The cantor asks his name. Being sensitive to his plight she asks, “Is it Steve? Is it David?” Max once again finds his voice and says, “You remember, it’s Max!” After this rather humble beginning his confidence and ability to converse grows. Several weeks later he approaches her after church and I overhear him telling her “I’m the cup helper at my school. Emily is the napkin helper!”

Topics surrounding church seem to keep cropping up in our conversation. We have found that going over what will happen with Max to prepare him for an event is most helpful to him. When we plan baby Greta’s baptism I struggle for words to explain to both of the boys exactly what we are doing. I finally come up with a decent explanation, that Father Fider is going to put water on Greta then say a prayer asking God to always take care of her. I am not sure what they think of my explanation, or if they really care. No one asks what the water is for. They both perform superbly during the service, which is most of what I had hoped for. A few nights later while bathing Greta however, I must reconsider what I assumed they took from this experience. As I am rinsing the baby off, Max starts talking about the Father, Son and Holy Spirit. I surmise the water reminded him of the priest’s words during the sacrament. The two boys begin pondering with one another "who is the Holy Spirit and where does he or she live?” Alexander determines that the Holy Spirit is really our beautiful cantor lady. Max adds that she lives at home.

So it is that Max puts some of the final pieces of his childhood together. He plays with Alexander, friends and enemies both with his partner and rival. They create all manners of fantastical houses, tents, boats and vehicles using couch cushions and blankets, until one or the other dissolves into tears, shouts, or shoves; or better still peals of rowdy laughter. He provokes and is provoked as the two siblings carve out for themselves what I hope will end up as an amicable and lasting relationship. I look at Alexander and realize that the only person other than Jim and myself who lived through this story will never remember what really happened. Could this story we have lived really be true? I know it is when I watch Max singing along with the tape in the car, a song about the treasure of being with someone.

Playing house, singing songs, reading books when you read along

Matinees, puppet shows, dressing up in silly clothes

Making jokes, baking cakes, going fishing on the lake

Hopscotch, cards, tic tac toe, trips to town - come on let’s go

Holding hands at the zoo, see the bears and kangaroos

Making faces, drawing clues cheers us up when we have the blues

Flying high on a swing, I’ll be queen and you be king

Riding in the car, playing outside, watching clouds in the sky

Goodnight kisses

These are the things I love to do, to do with you

Things to do with a child who once had little to do with us and our world. I listen to him now, and remember how it was, as the tears stream down my face unchecked.

Epilogue

In the months immediately following his fifth birthday, Max seems more and more steady and confident with some of the final skills that make his ability to interact complete. I did not approach the window of opportunity we had with the expectation that Max’s learning would halt after the three years had ended. Rather it has been a great push to continually evaluate and construct a system of language, which in a neurologically typical child would develop without any particular effort. Now we begin to see the payoff. Watching him use and refine all of the skills he has painstakingly acquired, it hardly seems possible that only three years ago we spent months encouraging him to make any speech sound at all.

As fall decidedly becomes winter, our days get shorter, the wind more brisk. We are in the process of selling our home and building another. Three children in our household keep the days lively and busy. Yesterday’s Halloween costumes become today’s pajamas. Sticker charts reside on our refrigerator, testament to the rewards earned by good behavior. These charts and their rewards have done much to teach both boys some basic math skills. Initially completing a 5-sticker chart entitled its owner to a toy purchase at the discount store. Soon the number increased to 10. It doesn’t take Max long to realize that more is not always a good thing. Some early lessons in costs, I hope. Max seems to learn these basic skills without formal teaching. I am relieved. We have done much formal teaching of other things in the last three years.

He learns to read, finally putting together most of the pieces he has been assembling over the past year. He reads road signs to me as we drive along. “Mom, that doesn’t say homework ahead, it says road work ahead.” He uses familiarity along with phonetic decoding and context clues in his reading. Another skill I am happy to not have to teach. He reads books aloud, at times faltering as he encounters long or unfamiliar words. The guesses he makes assure me he has developed strategies beyond his outstanding memory. He reads everything he sees; his appetite for words is insatiable.

He asks me if he can go to the bathroom when we are at a fast food restaurant one day. I am in line and don’t want to lose my place. “Can I go in the WOMEN door?” he asks me. It is the first time he has gone to the bathroom in a restaurant alone. Later he tells Lynn about it. “I went to the bathroom at Subway! I went in the WOMEN door.” We have talked about why some doors say WOMEN and some doors say MEN. One day he tells me “Mom, you’re a WOMEN.” Of course this launches an entire discussion about men and women. There was a time during my pregnancy that gender was fascinating, and he had to comment often about who had penises and who did not. Thankfully we don’t need to go into these anatomical differences anymore.

He surprises sales clerks by addressing them by name. No one suspects that he can read most any nametag. His manners are impeccable. I like to take credit for having such a well-mannered child, though I know much of it stems from Max’s complete ability to follow the “rules” of a system. This is evident when he is sick one evening. After emptying most of the contents of his stomach in the toilet, I ask him if he needs to throw up anymore. “No thank you,” he answers.

He develops sequencing ability, which I had no doubt he would. As with most things with Max, it is conveying the idea of what we are trying to teach him that is the hurdle to overcome. With many examples on paper and through our retelling of familiar events, he grasps the idea that the order in which they occur is important. Once he gets the idea of sequencing, he is able to retell an extremely detailed description of events. This detail is not limited to things current. As we are looking at a picture that was taken during our visit on the train two years prior, Max is quick to point out that there was a carnival that day. I had forgotten until he mentioned it. The morning after he returns from a trip to Camp Snoopy with my mom, dad and Alexander, he casually tells me about all of the rides, Lego Land, and the underwater museum.

He retells a story his teacher read to the group at nursery school about Corduroy the Bear. He tells the exact sequence of what the bear does in the story. He tells me the bear closed his eyes in the tunnel. I ask if he is hiding or if he is tired. While Max will usually understand what motivates a character in a story to act, he doesn’t explain this well yet. He tells me the bear closes his eyes with his hands because he is afraid of the train. All of the building blocks Carol worked to help Max develop make these inferences we are now seeing possible. At other times I am not as appreciative of his ability to infer. One particularly rambunctious evening, when I have tired of their noise, I tell both boys that they need to use whisper voices because Greta is trying to sleep. Max inspects her face, and then smartly tells me “No he’s not, Mom. His eyes are still open.” I don’t correct his pronouns, as that will only validate what he has said.

In other ways I still see evidence that his language is a bit “off”, and may remain slightly different. The morning after his stomach upheaval, I ask him if he is feeling better. “Oh, yes!” he tells me, “My chicken pox are all better.” Another morning, I am trying to convince him to wear something other than sweatpants for his school photo. I tell him he can either wear jeans (which he hates) or church pants. After a few tears he settles upon church pants. I show him the two pairs of pants he can choose from, but he is still upset. He tells me “I want church pants with elbows!” I realize after a moment that he is talking about the pants that Alexander wore to church for Greta’s baptism, pants with suspenders.

At Thanksgiving time Lynn does a small group activity where each child tells what he or she is thankful for. Max has seen something like this on television. As soon as Lynn poses the question, Max volunteers that he is thankful for snow so he can make snow angels. He says he is also thankful for the planet earth. His answer makes me suspicious, but I can’t identify it from any television program I have seen him watching. Later when I ask him, he tells me he is also thankful for Mom, Dad, Greta and white ice cream. Perhaps he copied his initial answer, but I have no doubt that these are the things he is truly thankful for. Later during the same week Lynn points out that Max prefers reading Jack Prelutsky to Shel Silverstein. She tells me she is thankful for how far Max has come, that he has a favorite poet.

I write these final pages as Christmas time approaches. Trimming the Christmas tree, baking a “parade of cookies”, wrapping presents and visiting Santa Claus are all things Max anticipates aloud, and talks about afterwards. After we decorate our home, he tells me he needs help with something. It is the snow globe; he wants to inspect it but knows he ought not handle it alone. He falters, and then asks me “What’s this called?” This is the first question most children ask. It is the first time Max has ever asked this question. It is one of the final things he adds to his system of language.

When he sits on Santa’s lap, he wants Santa to know about his baby sister Greta, to be certain Santa won’t forget to bring her a present. Jim’s mother tells me about this, I am not there to witness it. I wonder which words he used, how he explained such a thing. Then I realize that he must have explained himself well, or I would not have learned of it.

The story ends with a baby lying in a bassinet. She is watching her oldest brother play. Her mother writes, guiltily ignoring the dozens of household chores, knowing that they will wait at least for a time. The little boy, who is five years old, adjusts the bassinet so that baby sister can better see the action his little people are carrying out.

He rummages through the furniture of his toy house. I know the bed is somewhere he mutters. The mother glances at him, then at the baby. She could be a replica of him at that age. He has lined the little people up, twenty or so of them, at the doorway of his house. She asks why they are lined up, recalls a time when a child lined toys up on the windowsills of their home, silently, over and over again. He tells her they are waiting. What are they waiting for? Though she knows this child bears no resemblance to the child of her memories, she is still compelled to ask. They’re waiting to wash their hands. His tone conveys his impatience with her questions; the answer should be obvious to all.

He shifts his attention away from the house. He has taken the Christmas stockings from the mantle, and now wraps them around her neck. You’re sick. You need bandages. As she continues writing, he fetches a plastic fork from his playroom, which he puts in her mouth. I have to take your temperature. He gets a quilt from the couch, which he wraps, around her shoulders. It is becoming increasingly difficult to ignore his ministering. She saves her writing to the disk. He removes the plastic fork from her mouth. It says you’re better. You can play with me now.

She looks at the words she has written. “I find that being a part of the story of Max becoming who he is I have experienced some sort of rebirth. This rebirth is not an act of will or faith, though throughout this story I have had plenty of use for both of those. It is something imposed on me. I have become someone new. Someone whom I loved more than my own life was very nearly lost. We love our children recklessly, impossibly helpless in the face of losing them. Through the years of this story about finding him, I discover now that my whole life is different. I feel more deeply and simply that my life is mostly about loving people. Not that I do it well, but I believe now that I am here only to learn how. I am not pious or holy. I am only gripped by grace.” She looks away from her screen, away from the end of her story. She stands up as he takes her hand and leads her across the room. It’s not the end of the story she thinks. It’s just the beginning.

Copyright © 2000 Karen Dembroski. All rights reserved.