Tag Archives: speech

Searching the Storm for Silver Linings

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It’s 6:53 a.m. I’m sitting on the commuter train to Manhattan, where I will transfer to a subway to my office. The train, which was scheduled to depart at 6:45 a.m., has not left the station (our community is the train’s origin), because a door is stuck open. Here we sit, waiting.

This morning, the train feels like a metaphor about Martin’s recovery: All ready to go, everything operational, until something unexpected jams the trip.

Martin talks a lot these days, and he has no filter, and it’s getting him into hot water with children and adults alike. Here are the texts I received yesterday from the behaviorist at Martin’s school (edited for length and clarity):

Problem this week was really filtering. I did take Martin out of class today. He was telling some boys on the carpet they were dead. Boys said stop. Teacher told Martin not to say that, it is not funny. He said yes it is and repeated laughing. She then asked him to move his seat and come sit by her (class was on the carpet). He told her no and continued to laugh and repeat.

At that point I stood up and told him to come with me to the hallway. He said please no. I just gestured and he came. I spoke to him sternly outside.

I told him no more trying to be funny. He is saying hurtful things. I typed up the “hurtful things” he said this past week and went over them with him. The speech teacher will do that as well.

[Here she forwarded me a photo of the write-up of “hurtful things” Martin has said. The worst was telling a girl she should not be in the school because of the color of her skin. Martin doesn’t believe that (I hope). He’s been perseverating all month on Martin Luther King, Jr. and his accomplishments. I’m guessing that he interpreted his comment as funny based on the absurdity of past discrimination. Still, hearing that Martin had utter such a remark sent my emotional state tail-spinning.]

The aide who covers specials also made a very good observation. She said some of the boys who play sports together are very friendly and in gym they purposely bump into each other, play footsies, etc. Martin sees this behavior and then of course when he tries to execute it does so in an inappropriate fashion or at an inappropriate time.

So the boys are joking around. Martin observes this and then doesn’t understand why when he does it it’s not right.

Yesterday, at church Kids’ Club, I heard Martin yelling, during kickball or some other game in the gym, “Raise your hand if you’re native!” He meant Native American. The term came up this week, when Martin asked me why Northwest Territories, Nunavut, and Yukon are Canadian territories instead of provinces, and I tried to discuss former European colonies versus territories with more First Nation and Inuit influence. On some level, I know that Martin is genuinely curious about the relationship between native and colonizing populations. On a more immediate level, I am horrified that the expression of his curiosity is demanding to know who among his church peers has native heritage.

I’m at my office now. That commuter train I was sitting on—it got cancelled. The maintenance crew couldn’t fix the door. All passengers, including me, had to gather their belongings and catch the next train, scheduled 34 minutes later. The business call I was planning to take form my office at 8:00 a.m. had to be rescheduled. The later train, of course, was crowded and uncomfortable.

But at least I had a seat; by the second stop, onboarding passengers were standing in the aisles. At least I waited the extra half hour inside a train; passengers at all subsequent stops were standing outside, in the cold, on the platforms.

At least I had a home to come from, and a job to go to.

At least Martin is talking, and attending school.

Conversation, Y’all

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In my law practice, we work with an attorney from Texas who likes to throw “y’all” into sentences, even in email. She writes, “Think y’all need to flesh out that argument,” or, “I’m going to that hearing, and y’all should too.” As a literary device, her “y’all” is most effective as a lead-in or closer, like, “Y’all, we cannot take that case,” or, “Think that one through, y’all.” The concluding “y’all” is grandiose. When this attorney ends a sentence with a comma and “y’all,” I think, Did you get that? Did you pay attention? Because she was talking to you.

Being New York born and raised, I’d sound silly if I tossed y’all around the way my co-counsel does. So when I do choose to conclude a statement, especially a mono-word declaration, with a y’all, let’s agree that it’s extra-grandiose.

Conversation. Conversation, y’all.

Finally, we’ve got conversation. The kind of conversation that involves listening and responding to the partner.

Our family employs a housekeeper who comes weekday mornings, usually arriving just before Martin and I leave to catch his school bus. One day she was surprised to find Martin playing in the family room, and me away from home. (I had an errand to run, and by previous arrangement would be returning to retrieve Martin and drop him at school; Adrian was in his home office, working.) Given that Martin has always shied away from speaking with her—until recently, he buried his head in the sofa pillows whenever the housekeeper addressed him—she was even more surprised to have this conversation with him, subsequently relayed to me:

HK: “Martin! Why are you at home? Don’t you have to go to school today?”

Martin: “I am going. My mom is coming home to take me.”

HK: “If you want, I can drive you over now.”

Martin: “No, it isn’t allowed for anyone different to drop me off.”

Martin and I are spending the coming summer in Nicaragua. (Remember this post? More details later.) One morning, over breakfast, Martin asked, “How many days will we be in Nicaragua?”, and I replied, “Sixty days. All of July and August.”

Eight hours later, in the car, without additional prompting, the following conversation ensued:

Martin: “July and August each have 31 days.”

Me: “That’s true.”

Martin: “But you said we will be in Nicaragua only 60 days?”

Me: “Good point. What is 31 plus 31?”

Martin: “Sixty-two.”

Me: “So we will be gone 62 days.”

Martin: “Mommy, is Nicaragua going to be the longest trip you’ve ever taken?”

Me: “No, once I was in India for several months. I was studying there.”

Martin: “Will Nicaragua be the longest trip I’ve ever taken?”

Me: “Yes.”

These are conversations, y’all. They involve give-and-take. They require response to what the conversation partner has said.

I’m excited, of course. And there’s a caveat, of course. Most of Martin’s conversations still revolve around what fascinates him: right now, bridges, geography, and names. So while he’s made progress thinking dynamically enough to add to a conversation, he still needs to reduce his rigidity and apply that dynamism to a variety of topics.

Y’all.

All of a Sudden, It Happens

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Martin and I are on a flight to Chicago, to see Dr. Zelinsky. Two things happened in the airport:

First, the metal detector. I have my qualms about the effects of metal detectors, but I let Martin pass through them. It’s a nod to convenience, I suppose. Plus, at least it’s not one of those x-ray body-scan machines. I have even more qualms about them. Passing through the metal detector used to be a challenge for Martin. He might be scared, or refuse. When he agreed to pass through, he rarely succeeded without setting the machine off by touching its sides—either he clumsily bumped them, or his hands naturally flew apart for sensory input and balance. After one or two tries, the TSA agent would let me walk though with Martin, picking him up or holding his arms down and his body steady.

Today as we approached the metal detector, I lined Martin up and said, “Walk though carefully! Don’t touch the sides!” To my surprise, Martin stood ramrod straight, pasted his arms to his hips, and walked directly though the machine. Then he iced the cake: On the other side, instead of wandering away, he stopped and waited for me.

Second, the Windy City. As we sat at our gate, Martin watched the information screen and asked questions. “What does that number mean?” “Is that a picture of our airplane?” At some point, he looked at the destination name and said, “Chicago is the Windy City.” I couldn’t remember ever having told Martin that Chicago is called the Windy City, so I asked, “How do you know that?” Martin replied, “Because my daddy told me.”

What’s the breakdown? On and off for months, I have tried to get Martin to understand the question, “How do you know that?” If we are driving and he says, “That’s a hotel,” I ask, “How do you know that?”, trying to prompt him to say that he saw the sign or read H-O-T-E-L. Instead, he responds, “But-because it is.” If he makes an assertion beyond his experience, like, “All kids except me eat popcorn!”, I say, “How could you know that?” He responds, “But-because they do.”

This morning was no such exercise. I wondered how Martin knew Chicago’s nickname, and I asked without thinking about whether he could answer. His perfect response, missing even his trademark “but-because,” surprised me a second time.

Two big successes inside ten minutes! Still, you know me: I must always temper my enthusiasm. While we were waiting in the jet bridge, another passenger saw our seat numbers and remarked kindly, to Martin, that we were all sitting in the same row. This prompted Martin to ask me whether our row had three seats together, or two. When I told him that our row had three seats together, and that someone would sit next to us, he had a little meltdown and yelled, “I’m not ever going to sit in two seats again! Not ever!” He was crying as we entered the plane.

Did I mention the two successes?

Idioms All His Own

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We had to wait a few years, and now Martin’s speech skills are finally progressing. He has trouble with more complex formulations, such as asking and answering “why” questions, or narrating a string of events, or using “did” plus the infinitive instead of the past form (“He did went.”). Other than that, he can express almost anything.

On the other hand, when I say Martin can express almost anything, there’s a qualifier: “in his own way.”

Sometimes he’s making up words. I go with it and use the correct term in return:

“Martin, I don’t want you writing on these piano keys.”

“No writing?”

“No.”

“No marking?” (He means using a marker to write. That’s close.)

“No.”

“No pencing?”

“Nope, no using a pencil.”

“No craying?”

“Nope, no using a crayon, either.”

Sometimes his formulation leaves me wondering, “What led him to that way of saying it?”:

“Martin, would you stop playing with the telephone?”

He’s in the bedroom, messing around with the bedside phone.

“Okay.”

He keeps playing with the phone.

“Hey, get out of the bedroom.”

“Okay. I’m going to go to the room that’s written here.”

He points to the side of the phone, where “family room” is written on the extensions. Then he zooms away to the family room. Most people would have said, “I’m going to the family room,” right? Martin’s choice works just as well.

He likes to make comparisons. Some are natural and make a lot of sense, as when he asked me, “Am I going to have two [Anat Baniel Method] lessons with Miss Sharon today, just like I had two lessons yesterday with Miss Verena?” Or this morning, when he wanted to go to the basement and play the various musical instruments Adrian has relegated there: “I have many instruments in the basement, like a concert.”

Other comparisons—not so natural. Martin likes to drink a kombucha beverage with chia seeds. This morning I asked what he wanted to drink with his (neverending) breakfast. He responded, “I wanted kombucha with a group of seeds in it. Like a singing group.” Chia seeds like a singing group? Does he really think that, or is he experimenting with uses for the word “group”?

I suppose that, as his language continues to improve, Martin will speak more like other people. I’m trying to write down these little Martin-isms now, while we’ve still got them. They represent one more special mile in the recovery marathon.

Developmental Delays

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Martin and I are in Texas, visiting my parents. Previous visits here brought Martin unmitigated happiness, as he basked in Grandma and Grandpa’s attention and enjoyed school-free all-day playtime. This trip has been different. Almost as soon as we arrived he became moody and crabby—and asked to go home.

After a few days I realized that Martin has matured, socially. He misses his little friends and interacting with other kids.

I decided to take him to a toddler playgroup sponsored by the church I attend when in Texas.

I didn’t know any of the families attending, so I faced the usual question: What explanation do I give?

I’ve admitted already that I hide Martin’s autism, constantly. My blog is anonymous, and Adrian and I choose not to share Martin’s condition.

The playgroup presented more challenge than usual. We were there specifically to spend time with other toddlers, all of whom were neurotypical (at least as far as I could tell). We were strangers asking to be welcomed. And the differences were bound to show.

What to do, what to do?

Martin, who is about to turn four, was the oldest child there. The next-oldest was a boy almost three, the son of the playgroup’s coordinator. After some brief introductions, I approached that boy’s mother and said:

“Thanks so much for having us. My son has some speech and language delays, so socially, I guess, he is probably right about where your son is.”

That was it.

No hiding, no blaming Martin’s quirks on tiredness, or on speaking Spanish better than English, or on being shy. And no reference to the A-word. I said he has “some speech and language delays” and left it at that.

We spent 90 minutes at the playgroup, and Martin did nothing to indicate that his issues went beyond “some speech and language delays.” He was recalcitrant, to be sure, but neither oblivious to the other kids nor obviously ASD symptomatic. He made eye contact, tried a variety of activities, and spoke to the adults. No tantrums erupted. When I had to leave to visit the restroom, I asked Martin whether he needed to join me. He considered, then responded, “No. I want to stay here.”

Martin’s conduct at the playgroup, along with my choice of introductions, got me pondering a conversation I had weeks ago with his Track Two doctor. The topic was whether the A-word still applies to Martin. Autism, as I understand the condition, is defined by symptoms, not by causes. If a person displays enough of the symptoms, to enough of an extent, then s/he is classified as on the spectrum.

If Martin no longer displays many symptoms, and the ones still present (like repeating words and questions) are infrequent, does he still have autism? Was my statement—“some speech and language delays”—accurate, even if we are still battling the underlying causes of autism?

I don’t know the answer, of course.

But I’m over the moon just to be asking the question.

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.