Category Archives: Language

Update on Questions

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Martin doesn’t ask questions yet. Questions are non-linear language, and (as I’ve discovered) they are complex. So far, Martin uses only imperative and declarative speech. For example, if he can’t find his flute, instead of asking, “Where’s the flute?”, he repeats, “I want the flute. I want the flute,” until someone helps him find the flute.

I’ve got some yes/no requests from him, mostly by rote. We have a lot of exchanges like this:

“I want more tea.”

“It would be nice if you would ask me.”

“Can I have more tea?”

I don’t really count those requests as questions, per se, because they are (1) scripted and (2) not seeking information.

In the past week, I’ve witnessed the first glimmers that we might be turning the corner (and I hope I’m not getting ahead of myself). Tuesday, as he and I were walking together, Martin spotted a jet in the sky. “A plane!” he blurted (as usual), pointing (a newer development). I replied, “I see it, too.” Then Martin said, “Where is the plane going?” I’m not certain Martin was really looking for an answer; he seemed almost uninterested even while inquiring. And I wondered whether, “Where is the plane going?” wasn’t a scripted question, repeating part of a school exercise. Nevertheless, I made a big deal of responding. Saying I wished I knew. Observing the size of the plane and guessing the possible destinations. Trying to make Martin feel rewarded for (possibly) asking a question.

Did it work? Maybe. Wednesday afternoon Martin and I were to meet Adrian at the airport, to fly home. (We’d made a family trip to Chicago, where Adrian had some work to complete before coming to O’Hare.) Martin hadn’t slept well the night before and was restless, so I made a big deal about meeting Adrian and how happy we would be. Almost as soon as we entered the airport, before we reached the self-check-in machines, Martin asked, “Where is Daddy?” He did not look directly at me while saying those words, but this time the question seemed authentic. Martin expected his father, and upon not finding him, wondered what the deal was. Immediately I knelt to catch Martin’s eye and said, “Let’s check in and clear security. I bet we’ll find him at the gate.”

I’ll report on more questions as they come. I’m looking forward to a day when Martin asks questions non-stop, at which time I’ll post on the topic How Do I Shut My Kid Up?

Frustration Posting

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Months ago, when Martin was having more trouble sleeping—if you’ve been reading for a while, you may remember this—I would sometimes draft posts during those long midnight hours, sitting in his room with an iPad. To myself, I called it “exhaustion posting,” and I knew it wasn’t a good idea. When it’s 3:00 a.m. and I’ve slept eight hours during the past 72, it doesn’t matter how much progress we’ve made overall or how bright the future looks. I will have nothing nice to say.

I’m about to do something else that the reasonable part of my brain (the part that gets overshadowed, often) knows is not a good idea. Let’s call it “frustration posting.”

Why am I frustration posting when I know I shouldn’t?

Because I’m frustrated.

We’re in the dumps again. Crapsville. The Land of No Focus. The State of Bad Digestion. Obsession City.

Autism territory.

When Adrian and I returned from vacation last week, Martin’s symptoms were, I thought, more pronounced than when we’d left. I concocted several explanations—change in routine without school, anguish at wondering if his parents would return, a stale supplementation routine—that allowed for easy solutions.

We’ve been home now six days. So far, the easy solutions have failed. (I’ll admit that I have not yet updated the supplementation. I have a call scheduled for Thursday to discuss that with Martin’s excellent Track Two doctor.) Martin’s belly is distended. He has diarrhea. He’s scratching. And the behavioral symptoms have become yet more pronounced.

Getting Martin fed and ready for school this morning was like weaving a basket from cooked spaghetti. Nothing worked. He lacked the attention to put food in his mouth, absent constant nagging. He had no language to express what he sought and reverted instead to “You wan’ you wan’ you wan, I wan’ I wan’,” without object or variation. He refused to stand long enough to get his pants down for the toilet, or to don a jacket for the New York winter; when I tried to accomplish those tasks, he threw himself against me or fell to the floor. Adrian, who takes Martin down to meet the school bus, later reported that Martin had been unable to engage in even simple conversation like providing his teacher’s name.

This evening was worse. Evenings used to be the most difficult part of my day, because as Martin grew tired, he grew unmanageable, even less able to read my signals or control himself. I thought those days were over. Today he arrived at 5:30 p.m. with a babysitter, utterly hyperactive, laughing without obvious reason, jumping on the sofa, darting from chair to stair to table. At 6:15, when the babysitter prepared to leave, Martin began screaming because she zipped her vest. That’s a special new highlight, this fixation on zippers. Once the poor sitter managed to escape, from 6:15 until bedtime was a near-unmitigated scream-and-cry fest, punctuated only by bites of dinner and senseless verbal demands. “You wan’ bath. You wan’ not bath. No. No. No. You wan’ counter. Mommy is coming back. She’s coming back. You wan’ go outside. Outside.” Every chance he got, he grabbed my cardigan and yanked the zipper down or pushed it up until it caught my hair or the skin of my neck. He left his plate and ran around. He slunk from chair to floor and refused to rise.

When I finally got him into bed he tried to insist on wearing the tight winter vest over his pajamas.

I probably should have indulged him. Instead I refused. Scream-and-cry fests diminish my empathy. Insofar as scream-and-cry fests are symptoms of something amiss within Martin, they should cause the opposite, i.e., a flood of empathy. In the world of reason, that would happen. In the world of frustration, it does not.

So there you have it. The bad with the good.

Right now I’m telling myself that we turned the tide in late November and early December, and that we can do so again now.

Right now I’m hoping for a better day tomorrow.

Right now I’m trying to breathe.

Raw Narrative

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I wanted to write about something that happened this morning. Then I realized that I had already written the event, in a (maybe) more authentic voice than I would employ for blogging. Let’s call this earlier version the “raw narrative.”

Adrian has been out of town on business since Sunday. (Which leads me to another opportunity to express my unrestrained admiration for single parents, and particular single parents of special-needs children. After a few days of handling Martin’s schedule alone, I’m toast. You amaze me.) When Adrian is traveling, I have a habit of sending him morning and nighttime updates via Blackberry.

Here, unedited except to change the names, is this morning’s update for Adrian:

Good morning, Sweetie! Martin and I are looking forward to having you back. It is drizzling here but so far not too bad.

Sweetie, I started crying this morning, in the street. I was standing with Martin, watching for the school bus to come. He was holding my hand, waiting patiently, not fidgeting, not flopping to the sidewalk or hanging on my arm, and he was making spontaneous sentences about some things he saw (“The fire truck is red,” “The man is running”), and then it hit me that he is getting better, that we’re managing this struggle, that every day I see more and more of the person emerge who our son was meant to be before this god-awful disorder took hold. I looked pretty foolish, I think, crying on _____ Street. But there I was.

In other news, I sent the first brief off at 4:00 a.m. and haven’t received comments yet, so I took advantage of the lull to jog over to the Union Square greenmarket for duck eggs, cow bones, and ostrich filet, to make sure the fridge and freezer are stocked for when my mother is here. My word, what have I become? Also got some of that buttery “Two Guys from Woodbridge” basil that we had last week. Come home so I can feed you.

Kisses.

Let me begin by saying that I’m not usually a crier. At least, not an in-the-street crier. As the penultimate paragraph indicates, I had worked until 4:00 a.m., which left me two hours for sleep before I had to rise at 6:00 a.m., which is the breakfast-and-school-prep time I need when Adrian is away. To that I will add that our senior-advisor cat, Philly, who inexplicably screeches during the night—not to be confused with our junior-advisor cat, Freddie, who pees everywhere—launched his half-hour hyena routine at 5:06 a.m., ultimately leaving me about 86 minutes for sleep. So I was tired, and emotions were heightened.

That disclaimer notwithstanding, the crying was entirely justified. Remember the three crap months we endured from August to November, when Martin’s yeast kicked up again and all the gains we’d made over the summer seemed to disappear? Gone. A memory. Martin is better than ever right now. His eye contact is so consistent that I rarely think about it; I assume that if I say his name, I will see his eyes, for as long as I’m talking. Joint attention is rising again. And Monday afternoon Samara noticed Martin casually taking the initiative to hold a friend’s hand.

We went through three months bad enough that I doubted the entire recovery process, and doubted whether I could endure. I know there may be down times to come, as well. But this day, here, now, I am so glad we’ve hung in there.

I will conclude by advising that I am in no way affiliated with or compensated by the “Two Guys from Woodbridge” company. I really did write that in the email to Adrian, and they really do grow magnificent buttery organic basil.

¡Hola! I’m Doing Well

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As I mentioned, we’re vacationing in Adrian’s country of origin. Martin performed at the top of his game our first day here: fully attentive, interacting with his cousins, chatting with adults. Since then, I think, the change in routine, air thick with pollen (to which Martin appears sensitive), and general chaos of travel have taken their toll, and he’s faded a bit. So I was particularly pleased with this interaction at a museum today. I’ve highlighted the best parts in italics:

Adrian, who has been carrying Martin on his shoulders, plops him onto a bench, next to another boy, perhaps four years old.

The boy greets the three of us: “¡Hola!”

“Hola,” Adrian responds. “¿Cómo estás tú?”

“Bien,” says the boy.

“Martín,” Adrian prompts, “¿le puedes decir ‘hola’ al niño?”

Martin looks at the boy and says, “¡Hola!”

“¿Qué es eso?” the boy asks, motioning toward a toy in Martin’s hand.

Martin comprehends the question immediately and responds correctly, “Un avión.”

“¡Mira!” the boy says, turning toward a video screen showing footage of a military exercise. “Son soldados.”

Martin makes no verbal response but likewise directs his attention to the video screen. They watch together for a few seconds, and then the boy wanders back to his parents.

Adrian and I are left beaming.

Score: one more near-typical interaction.

Memories. Shoot, Now I’m Glad I Wrote Them Down

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Before I started blogging in August, I kept a computer “journal” of sorts, wherein I jotted notes of how we were doing, in case I ever did want to start documenting the process. I haven’t opened that file since early August. This morning, however, I dug out the relevant USB storage device to search for a few paragraphs I remember drafting on the topic of maintaining friendships. (Look for that post for later in the week.)

My readers know I’ve been frustrated lately, feeling stuck. Reading what I wrote earlier this year provides perspective. These entries, from my own journal, stunned me:

4/20/11. Parent interview at [Big Imposing Hospital]. Martin’s scores range from 1st percentile fine motor skills to 97th percentile school readiness (letters, numbers).

4/25/11. Martin is not as good as he was over the weekend. He’s a little out of it. In the late afternoon, after Samara leaves, he becomes fussy, whiny, irritable. Finally, just before 6:00 pm he has massive foul diarrhea, and I recall that he has not pooped since Saturday morning.

4/26/11. Martin isn’t having a great day. No desire to work with [his ABA therapist]. [His PT] calls him “weak.”

4/30/11. In the mail come [the Track Two doctor’s] notes from our call. Among them is written, “Mother getting discouraged.” I’ve got to do a better job with keeping upbeat.

5/1/11. Take Martin to church with chips, books, toys. He hides under my maxi-dress, and his seltzer with kombucha squirts all over newcomer in front of us. Throws a tantrum leaving church. [A friend] patiently holds my purse and his bags as I strap screaming child into car. Then I shut door and—silence. He’s locked inside. [My friend] nods in salute to the silence and hugs me.

5/2/11. Martin is hot in defiance phase. Hates every change. Doesn’t know what he wants. Refuses even what he loves, like coconut oil.

5/3/11. At 7:40 pm (during bedtime) he unloads three days’ worth of poop, mostly undigested food. I consider the irony of seeing my carefully prepared concoctions emerge from the other end in more or less the same form.

5/6/11. Through the grapevine I hear about a typically developing playmate of Martin who has not succeeded in getting a pre-school placement for next fall. She will stay at the New York Kids’ Club instead. I feel some schadenfreude creeping in. I tell myself that under the circumstances, schadenfreude does not make me a bad person. At least, not that much.

5/9/11. Horrible bedtime. Martin is so worked up, and he fell asleep on the school bus coming home. For the first time in weeks I have to restrain him. He struggles and cries. I miss a business call at 8:00 pm.

6/6/11. A disaster of a day. Martin is awake since 1:40 a.m. He is miserable, whining, crying all day. [His babysitter] cannot get him to nap. Nor does he sleep even in the school bus. I am running on two hours’ sleep. Call with Kathleen is unfocused, wandering. I express doubts. I wonder if we’re making progress. School report says Martin was in “more of a daze than usual” during circle time.

It’s November now. Martin sleeps, eats, and poops well. He engages in only limited self-stimming behavior, such as running back and forth. He walks heel-to-toe. He possesses sufficient body control and proprioceptive awareness that he rarely stumbles. My big complaints these days are continued poor attention, especially in group settings; echolalia and language delay, including the inability to ask questions; and fussiness when we deviate from plans or Martin doesn’t get what he wants.

I’m finding it helpful to recall the days when I had to worry about screaming fits, inability to sleep or digest food, and a craving for secure space that had Martin hiding under my dress.

I’m finding it very helpful.

The Most Beautiful Words, Ever

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Yesterday evening I was doing a new HANDLE exercise with Martin called “Airplane Flagger.” Martin lay on his back on the floor, and I manipulated his arms: from his chest outward, from flat at his sides to over his head. At some point Martin mistook Airplane Flagger for “prelude to tickles,” which is not a HANDLE exercise but a fun game when I pin his hands above his head in order to tickle his underarms.

I figured, What the hay. Let’s make it tickle time, and set to tickling. I just love the joy of his unadulterated little-boy laughter.

A few seconds later I released his arms and let him catch his breath. I waited, poised above him, fingers pressed together in tickle-threat formation, holding Martin’s expectant gaze as RDI suggests. Martin could hardly contain his anticipation. “Again,” he said between gasps. “Again.”

So steady was Martin’s eye contact, I had to draw the moment out. I leaned closer and asked, “What? Whaaaaaat?”

And he produced the most beautiful words, ever.

He focused his eyes on my face, deliberately. He paused and considered. Finally, he said without bewilderment or guess, with the self-assurance of an accomplished orator:

“I want you to do that again.”

The sentence nearly overcame me. Instantly I analyzed it. An original thought, not heard and repeated. Subject. Object. Infinitive phrase. Adverb modifier. Perfection.

Martin’s previous best sentence, to my knowledge, came six or seven weeks ago, before he tumbled into the distraction that characterized last month. Dinner had just concluded. Adrian gathered Martin and announced bedtime. Martin became mildly distressed and protested, “I want to do sleepytime with Mommy.” That was a good, solid sentence—also included an infinitive phrase, and threw in a preposition—but “I want you to do that again” exceeds it in complexity, and requires proper use of both “I” and “you.” Prepositions are sand traps for an echolalic boy; he repeats what we call him (“you”), instead of registering the interconnectedness (the speaker is “I”). Perhaps we are approaching a milestone in his understanding.

Once my shock faded, as you can well imagine, I acceded to his wish and tickled. Again.

My son is a miracle.