Tag Archives: spectrum

Perseveration. Perseveration. Perseveration. Perseveration.

Posted on by findingmykid
7

Want to know what kills me?

Perseveration kills me.

Perseveration is verbal repetition. You might call it “harping on one subject” or “just not letting it go.”

Let’s start with a relatable situation: The C train inexplicably makes a 20-minute sojourn in Midtown—“Attention, passengers! We are being held momentarily by the train’s dispatcher. We expect to be moving shortly”—and you end up late to a lunch date. Then, even though you have a million things to discuss, the friend you are meeting wants to talk about your tardiness only. You might have a conversation like this:

“It’s not just today. You’re always late.”

“I know. I’m so sorry. Like I said, I did a great job getting out of the apartment today. Too bad the train got stuck. How is it going at work with your new boss?”

“The trains get stuck every day. You should build that expectation into your plans.”

“You’re so right. I have got to start doing that. Is the new boss a jerk like you thought?”

“They almost didn’t hold the table for us. They have a ten-minute policy on reservations at lunch.”

“I’m so glad they ended up holding it. This place is great. I ate here with my aunt last month. Oh my gosh, did I tell you what my aunt said on Sunday?”

“I looked like an idiot, sitting here alone. I kept saying, yeah, my friend is coming. It felt like forever.”

“I know how you hate sitting alone! Can’t believe I caused that. Did you at least get to do some people watching? I’ve heard a lot of actors eat here.”

“Next time you’re late I’m just going to leave. I swear.”

“I would totally understand if you did that. You look fabulous today, by the way. Is that the blouse you said you were going to splurge on?”

“You’re an old friend. That’s why I put up with you being late all the time.”

“Old friends are always the troublesome ones, aren’t they? It’s funny, isn’t it?: Remember how we used to get in trouble together?”

“Can you please just not be late next time?”

That would be a frustrating lunch, right? By this point you might want to yell, “Shut up! Shut up! I was late! You’ve got to move on!”

Now let’s consider autism perseveration. From the above example, remove (1) provocation (i.e., the late arrival); (2) verbal variation (i.e., the friend’s many different ways of saying the same thing); and (3) any hope of changing the subject (i.e., the reason you brought up the new boss, the blouse, and your aunt). Also, assume that the same topic will arise several times daily, and will last for hours. You might end up with something like the conversation Martin and I just had, which is also the conversation we had a few minutes ago, which is also the conversation we had dozens of times yesterday:

“Mommy, what’s your first name?”

“You know my first name, Martin. I don’t want to talk about names.”

“It’s Maria! Mommy, what’s your middle name?”

“You know my middle name, Martin.”

“And what’s your last name?”

“It’s the same as your last name. Let’s talk about something different.”

“Most people have a first name, a middle name, and a last name, Mommy.”

“That is true, Martin.”

“Mommy, what’s my first name?”

“Martin, look! There’s Uncle Rudy. Can you say hi?”

“What’s his middle name?”

“Hi, Rudy. Martin and I were just heading to the playground.”

[My brother Rudy:] “Hi, Martin! How are you doing?”

“What’s your first name? Mommy, what’s his first name?”

[Me:] “Martin, I think you need to say hi.”

“Hi! What’s your last name?”

Currently, names are Martin’s favorite topic of perseveration.  It doesn’t matter whether the object in question actually has a name. (“Mommy, what’s the name of this chair? What is Curious George’s last name? Mommy, that car doesn’t have a middle name?”) Other perseveration topics include bedtime (“Mommy, who am I doing sleepy-time with tonight? Who am I doing sleepy-time with tomorrow? Who am I doing sleepy-time with on Wednesday?”); residences (“Mommy, where do you live? Mommy, I live in New York. Mommy, where does that dog live? Mommy, he lives in New Jersey.”); and, especially, spelling. Martin is clever with the spelling. He draws me in by (I believe) intentionally substituting a different first letter:

“Martin, do you remember when we flew to California?”

“California starts with a K!”

“No. It starts with a C. You know that.”

“And what’s the next letter, Mommy?”

“A.”

“And what’s the next letter?”

You can imagine where that goes.

There is a bright side, of course. There always is. Before perseveration, Martin’s verbal tic was echolalia. He repeated the last word(s) he heard, regardless of whether it (they) made sense in context: “Martin, are you almost ready?” “Are you almost ready?” “It’s time to go.” “Time to go.” The echolalia is gone now. It’s in the “so far gone” category, even. In that sense, perseveration is progress. Martin’s babysitter reminded me of that a couple weeks ago. She and Martin had just returned from a play date with Harry, a nearly nonverbal classmate of Martin’s. Martin was perseverating on sleepy-time when his babysitter said, almost absentmindedly, “I bet Harry’s parents wish he could go on like this.”

More than two years into our recovery journey, Martin still engages in many frustrating behaviors. He loses attention, dawdles, wanders. His low muscle tone causes him to fall out of chairs and also to sit down anywhere—in a crowded grocery check-out lane, on the floor in the Starbucks bathroom, astride the playground rope ladder so other children cannot pass. When his mind works faster than his words, which happens often, he whines.

Of all the behaviors, perseveration is the worst for me. Martin repeats constantly. He talks when no one is listening. He chats merrily regardless of others trying to speak.

I admit this: There are times when I fantasize of yelling, “Shut up! Shut up! No one cares about middle names! You’ve got to move on!”

It’s only a fantasy, of course. If I go to lunch with a friend who can’t let tardiness go, I listen patiently until the discussion finally runs its course. When Martin carries on about nothing, I indulge him, or I say, “I don’t want to talk about that,” or I bite my tongue.

And then I kiss him, over and over and over again.

That’s my own game of repetition, to remind us both that Martin is my everything.

Martin: The Only Cause That’s Got Me Doing

Posted on by findingmykid
2

I’m kind of a nervous flyer. Whenever I fly, before take-off, I say a prayer along these lines: “I hope we get where we’re going. If we don’t, I trust that I’ll end up someplace even better. I trust that we’ll all end up someplace even better. But still I hope we fly safely, and I hope that the safe conveyance reminds me that life is limited and I ought to use it well.”

Tuesday night on the plane to Israel, I started to say that prayer, and I had an epiphany:

I don’t, at this moment, have fears for myself. I have fears only for Martin.

That’s not to say that I don’t worry about dying. Or, you know, a horrible disease or coma-inducing accident, or terrorist attack, home intruder, flesh-eating bacteria, mountain-lion bites, impalement. The usual.

I do worry about all those things. But my fears for myself have taken a backseat. A distant backseat. Way back, like at the swaying end of a double-length bus. As I recited my pre-take-off prayer last night, I had a feeling like, “If it’s my time to go, it’s my time.

“But who will take care of Martin?”

Martin is the only grandchild of my mother and stepfather. I know they would step in without hesitation and continue his biomedical recovery. And they’re not alone. My father, my siblings, my parents-in-law, my brother- and sisters-in-law. Any one of them, or all of them. They’d have a lot to learn, but they’d do it.

Then again, deep-down I wonder: How could anyone do what Adrian and I are doing for Martin? More accurately—and I’ve admitted: I’m a control-freak—: How could anyone do it to my exact specifications? The countless pills and liquids, the fifteen HANDLE exercises daily, the RDI, the Track Two doctor visits across the country. The faith and determination.

If something happened to me, would Martin still be able to reach his potential for recovery?

That’s it, then. In my whole life right now, the thing that matters most (maybe the only thing that matters?) is my son’s recovery. My pre-flight prayer now is simply that I stick around to see it through.

To own the truth, I’ve long been a person with a cause. Usually the cause involves animals, like ending the carriage-horse industry, regulating backyard breeding operations, or banning battery cages. But I’ve never been a person who took enough action for her cause. I give money. I speak out when asked. I hope and wish. I don’t do.

At least, not until now. My cause now is Martin, and I’m doing. Damn it, I’m doing.

Okay. The object is my son, and therefore this particular cause is just one step removed from pure selfishness. Moreover, it can (I trust) be accomplished entirely. I can recover my son. I can make him indistinguishable from his neurotypical peers. That fact alone separates Martin’s recovery from, say, world peace, or eradicating poverty and disease.

Still, it’s a cause, and for the first time ever, truly I’m stepping up.

Once Martin is recovered, what’s next? I have a sense that this episode could herald a new chapter in my life, one of doing instead of hoping and wishing. Maybe my cause will be promoting biomedical recovery, or defending practitioners like Dr. Usman who devote themselves to recovering children. Maybe I will stick to animal welfare, with the new perspective of having felt compelled to feed my son meat as part of his recovery.

Some years ago, when I was considering a career change, a friend told me to remember that a life is many decades long, meaning that what seems earth-shattering at one moment may in time reveal itself as only a bump in the road.

Not to be fatalistic (just contemplative), I’ve had four decades already. If I can recover my son, I will consider them well-used—even if, in time, this journey comes to seem only a bump in the road.

As for Martin, our efforts now will give him many decades in which to do whatever he wants, free from the grasp of autism.

Your blogger, hiking to the ruins at Avdat, southern Israel.