The Beginning

This is the second post in response to last month’s reader comment asking, “I’m very curious to know where you started. I have gone back and searched the blog and couldn’t find a journey type of blog. Can you write about this when you can? When did you get diagnosed, what were your earliest challenges? Where did he stand verbally when he was diagnosed?”

I’ve described from time to time Martin’s condition before we started biomed. Here I will try to rope those descriptions into a single post, divided into two parts: (1) my memories of our realization that Martin had challenges; and (2) our initial neuropsychological evaluation, completed a month after we began biomed.

All of this will be written with a caveat. That is, from ages two through five, Martin had additional biological and behavioral manifestations of his immune disorder that, for privacy reasons, I do not discuss on Finding My Kid. Although this blog is written anonymously, nothing in this on-line age can ever be completely anonymous, and so I err in favor of protecting Martin’s dignity, and our family’s.

My Memories

Martin was born early summer 2008, in circumstances that I have described elsewhere and that I am certain contributed to the immune challenges he would later face. His first 18 months out of womb raised few eyebrows. After initial trouble latching and correction of a tongue-tie (many biomed parents see a correlation between tongue-tie and autism), Martin nursed well, for 22 months total. He started solid foods at six months.

Remarkably, at just 17 days, Martin could roll over, front-to-back. He did so in front of his pediatrician, who said, “You should videotape that.”

Martin also picked up words, so many words that to us, as first-time parents, he seemed to be “advanced”—whatever that means. He could give the nouns for objects to which we pointed. He could repeat lines of dialogue from movies and television shows. Wow! Adrian and I thought. We’d never heard, at that time, of echolalia.

Looking back with the hindsight of almost eight years in the world of autism, I recognize at least four red flags before Martin turned two. First, despite his ability to say words (lots of words), Martin never began to develop any functional language. He never combined words independently. Although he learned how to say and use “no!”, he failed to grasp the concept of “yes” or “I.” Second, Martin never took interest in other kids. He never reached the level of parallel play. Indeed, he never even seemed to notice when other kids were present, never walked up to or investigated them. Third, he could exhibit extreme hyperactivity, to the point of being unable to stop moving. He ran in circles for long periods of time. I could put him into his oval-shaped crib for a nap and return to find him running tiny laps around the edge of the mattress. Fourth, the sleeping troubles started early. We sleep-trained successfully at seven months old. Within six months, that had ended. Martin began taking longer and longer to fall asleep (60 minutes, 90 minutes, two hours) and waking frequently throughout the night.

Adrian and I finally began to recognize a potential problem around the time Martin turned two, in summer 2010. Samara, Martin’s nanny, invited some neighborhood kids over for cake to celebrate Martin’s birthday. When I observed the group, Martin stood out. He didn’t appear to be part of the group. The other toddlers came excitedly to the table for cake; Samara had to chase Martin repeatedly to get him to the table. Martin wasn’t able to blow out the two candles. He couldn’t make his lips into a pucker. He appeared to have trouble focusing on the task.

In general, Martin wasn’t listening. He couldn’t follow any direction, no matter how simple. If I held out a toy and said, “Here,” he walked away without taking the toy. He participated in Soccer Superstars. When the activity was “kick the little orange cone,” a dozen toddlers kicked little orange cones. Martin bolted to the next field and tipped over a goal. Because we were starting applications for selective private preschool—this really does seem an eternity ago—we enrolled Martin in the “Twos Club” at the Manhattan-based, for-profit “City Kids Club” (not the real name). When we signed Martin up with City Kids Club, they said they could help. They wouldn’t coddle him. They’d teach him to listen and to follow directions. It didn’t work out that way. When the Twos Club let out, half a dozen toddlers would sprint from the classroom and into their parents’ arms, showing off the art projects they’d made. Martin would wander out last, appearing not to notice me, shuffling under the direction of a staff member who carried his incomplete art project. (Eventually, the City Kids Club kicked Martin out of the Twos Club, an experience I recount here, under the subheading “Whence My Anxiety?”)

I called an old friend who was working upstate in Early Intervention. We talked by phone several times over the summer and, in September 2010, she was able to make a day trip to the City. She arrived late morning, and by mid-afternoon, she said, “I know this isn’t easy to hear, but based on what I’ve seen, Martin has autism.”

Martin’s autism was never entirely regressive; the autism was classic, insofar as there were skills he simply never acquired when he should have, like language or interest in peers. On the other hand, I recognized later that, during summer and autumn 2010, Martin was regressing. He lost the ability to point to distant objects. He lost eye contact, almost violently so: His determination to avoid locking his gaze on mine would lead him to twist his neck so far in his stroller that I feared he might injure himself. The hyperactivity began to alternate with extreme lethargy, when he would lie on his side, humming and pushing a toy car back and forth. He began drifting, walking the perimeter of our apartment’s large main room, dragging his fingertips on the wall to a sing-song sound. And his sleep, already poor, degenerated to almost non-existent. He could no longer fall asleep unless physically restrained. On the worst nights, Adrian and I had to work together, one of us securing Martin’s legs and ankles while the other lay half-upon Martin’s upper body and pinned his arms. Even then, Martin would clench and unclench his hands, roll his head, move however he could. When he finally slept, it would last no more than two hours or so. There were no more naps, ever.

Martin had the habit—I don’t remember if he did this always, or if it started around two years old—of going slack. When he grew frustrated, or didn’t want to do something, he let his body collapse onto the ground and stayed there, sometimes also screaming. Transitioning (moving from one activity to another) frustrated Martin, so he spent ample time, gelatinous, on the filthy subway floor and mats around the supermarket check-out.

He bumped into everything. When he ran, his head flew side-to-side and his limbs exploded in all directions. Low in muscle tone, he sat in the W position. He toe-walked. If he did take an interest in another child, he thrust his face uncomfortably close, as if trying to discover what it is that makes humanness.

During these days, these days I’ve just described, I saw my husband cry, the only time in our 18 years together.

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Martin observing London Bridge, from the Tower of London vantage.

The Professional Analysis

We changed Martin’s diet in January 2011 and began biomedical interventions in February 2011. The next month, March 2011, we brought Martin to the developmental neuropsychiatry program at one of New York City’s leading hospitals, where he was evaluated over four separate visits. The report, presented to us in April 2011, concluded with a diagnosis “according to the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM-IV-TR, 2000): Axis I: 299.00 Autistic Disorder.”

Here are selected findings (from the two examiners, as opposed to the parent interviews), as written in the report:

  • In the area of communication, Martin used a number of single words to label and some learned phrases, such as ‘I want . . . .’ He repeated ‘No’ frequently when he did not want to do something. Frequently his expressive language was not directed at anyone in particular. He pointed directly at objects but not to show interest in an object at a distance.
  • “In the area of reciprocal social interaction, Martin did not consistently use eye contact to engage others. . . . . He did not respond to the examiner when she attempted to call his name on four attempts but did so immediately when his mother called his name, though he did not look at her. He responded to the examiner’s pointing to the remote control bunny rabbit, not to her gaze and vocal prompt.
  • “In the area of restricted and repetitive behaviors, Martin gazed at the wheels of a truck repetitively and repeated ‘Hello’ over and over as he held a toy phone.
  • “Even though his mother remained with him, Martin had significant difficulty transitioning to the examiner’s office and into the structured testing environment. During testing, he was easily distracted by specific interests, specifically with letters and numbers, and this interfered with test administration at times.
  • “Compared to other children his age in the normative sample Martin’s overall performance on the [Mullen Scales of Early Learning, AGS Edition] was significantly delayed; he performed better than 2% of similarly aged children. His Early Learning Composite score is approximately two standard deviations below and suggests some delays in his cognitive development. Additionally, he demonstrated more unevenness in his cognitive skills than would be expected. His nonverbal, fine motor skills are a particular area of weakness and very low for his age, and his nonverbal, visual reception skills are also mildly delayed.
  • “Martin’s current repertoire of adaptive skills is somewhat more limited than would be expected for his age. His Adaptive Behavior Composite of 78 classifies his general adaptive functioning as moderately low; he scores better than 7% of other children his age. . . . [His mother] notes that he is making progress and attributes it to improvements in his sleep and the DAN protocol that was started 1½ months ago.”
  • Martin’s Early Intervention teacher “completed the Achenbach Caregiver-Teacher Report Form for Ages 1½-5 based on her view of his behavior over the past 2 months. . . . Her primary concerns relate to Martin’s inattention and his passive noncompliance throughout the day. . . . Martin is noted to sometimes use scripted language and to display delays in both his receptive and expressive language. He often does not answer when people talk to him and sometimes avoids looking others in the eye. He is sometimes disturbed by any change in routine. He is somewhat upset by new people or situations and may resist entering a new environment at school. He will occasionally place play-doh in his mouth.”

At the time we received the report, April 2011, I skimmed but did not read it thoroughly. The exercise would have been too disheartening. Instead I invested myself wholly in biomedical recovery, and trusted that we could make this better.

There you have our starting point.

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Martin discovering his inner knight at the Tower of London.

2 thoughts on “The Beginning

  1. I’m the reader that asked for this. I had been coming back knowing you would get back as promised. As I read and reread this I kept going back to our initial days too. In hindsight they all come back more profoundly pointing to Autism just that a year ago I didn’t know what Autism was. These thoughts are always heart wrenching and then I realise my mistake of asking you to go through it again. I’m really sorry. I see soo many similarities and it does offer me hope.

    • Don’t feel that way. It isn’t so painful, anymore, for me to go through the beginning days, because we are on the other side of most of that. Martin is not yet typical, but every month brings us closer to the goal. It can be almost cathartic, on the bad days, to look back and see how far we’ve come. You should have hope.

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