Monthly Archives: April 2013

Notes on a Wednesday

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Wednesdays, of late, are exhausting days for me and Martin. He plays hooky from school. We start the morning by driving more than 50 miles to Wilton, Connecticut to visit Martin’s new homeopath and, if it’s an appointment week, his biomedical doctor.

(Note to careful readers: We switched biomedical doctors five months ago, because Martin’s former practitioner moved to the West Coast.)

From Wilton, when our appointments are through, we get back in the car and drive more than 60 miles, back into New York State, across Westchester County and across the Tappen Zee Bridge and Rockland County, at last dropping into New Jersey at Ringwood, where Martin participates in hippotherapy. We eat lunch in the car: a sandwich for me, and Dr. Cow tree nut cheese with rice crackers for Martin. Then, while Martin spends an hour riding horses, I hike to a tiny farm and buy eggs.

Around 3:15 pm Martin and I get back into the car to drive 45 miles home. (Are you keeping track of all these miles?) Although it is the shortest leg of our journey, this takes the longest, anywhere from 90 to 150 minutes, depending on traffic getting back into and through the City.

Last Wednesday, on the morning drive to Wilton, I spent 20 minutes on the phone—hands-free Bluetooth, of course! I respect all traffic laws—trying to negotiate a good deal on the purchase of an infrared sauna. (More on that in a future post.) Martin was supposed to be practicing “being quiet while Mommy’s on the phone.” Instead, he grew increasingly agitated until he was sobbing while repeating, “You’re going to get off the phone! No more phone! You’re done with the phone.” I apologized to the sauna representative and finally, when I could barely hear him over Martin’s shrieking, aborted the call. Meltdown.

So that sucked. But three very cool things that did not suck at all also happened last Wednesday:

The update for Daddy: At the office of the homeopath—“Miss Lauren,” as Martin calls her—is a pile of toys. I was talking with Lauren when Martin appeared with a toy mobile phone in this hand and said, “Mommy, I’ve got a phone.” I replied, “Oh? Would you please call Daddy and let him know we got here okay?” Without further prompting, Martin nodded, hit a few buttons on the toy phone, held it to his ear and said, “Hello, Adrian? But because we’re at Miss Lauren’s. Okay. ’Bye.” (Martin is in a phase wherein he calls Adrian by his first name instead of Daddy or Papá. “But because” is a verbal tic that Martin has.) Comprehending my request? Pretending? Following a direction? Yes, yes, and yes, thank you.

The hippotherapy superstar: Martin does hippotherapy with a speech-language pathologist. Hippotherapy requires body awareness, multisensory activity, and concentration. Martin’s performance varies widely from week to week. (Martin’s performance on just about anything can vary widely from week to week, day to day, or even hour to hour. That’s the nature of the biomedical beast.) Last Wednesday, when I came to claim Martin after his riding lesson, his speech pathologist said, “He was awesome today. Awesome. Can you bring this version of the kid every week?”

The gesture of support: Do you remember my post from last Tuesday, about the best ways to be supportive of a family wading through autism recovery? It ended with these lines:

That’s all we really want, any of us, right?

A little faith, and a cookie.

When Martin and I arrived home from our three-state extravaganza last Wednesday—one day after I posted about how to be supportive—I found a package waiting for me. Inside was a card quoting those two lines. Under them, handwritten by the friend who sent this card, were the words: “Some of us need a whole box of cookies. Prayers to you and your family. Always.” Enclosed with the card? Yep. A box of cookies.

I’ve been reading the Thinking Moms’ Revolution new book of essays. In one piece, the mother of a boy on the spectrum is asking, “Why did this happen to my baby? What did I do wrong? Is God mad at me?” Her mother, the boy’s grandmother, intervenes and points out that, if things had been different, she would not be asking, “Why did God give me a healthy child?”, so she doesn’t get to ask “Why?” now.

Sage advice, right? What happened to my son—the Pitocin, the C-section, the antibiotics, the vaccines, whatever combination caused this autism—happened. But it doesn’t mean my life doesn’t rock steady.

It doesn’t mean I don’t live in a world of blessings.

The Wanaque Resevoir in Ringwood, New Jersey, where I hike while Martin rides horses. I took this picture with my iPhone a couple weeks ago. Life is good.

The Monksville Resevoir in Ringwood, New Jersey, where I hike while Martin rides horses. I took this picture with my iPhone a couple weeks ago. Life is good.

Support. The Supportive Kind

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Friends who know I have a son with autism mean well, but sometimes, even in their effort to be supportive, they say the wrong thing.

Here is the statement I hate most:

“All kids do that.”

Now, if you’re a friend of mine, and you’ve ever said about Martin, “All kids do that,” please do not worry. I know your heart is in the right place. I know you want to help. And this post is not directed at you, or at anyone in particular. Believe me, I’ve heard, “All kids do that,” from almost everyone within the limited circle that knows about Martin’s diagnosis.

I know from reading other blogs that I’m not the only parent who detests “All kids do that.” When someone says, “All kids do that,” then regardless of what that person means to convey, I hear one of two things:

1.      “I know Martin has autism and all, but don’t you think you’re going overboard? Maybe you’re a little hysterical about the whole thing, or you like to complain?”

2.      “I have absolutely no inkling about the realities of your daily life with Martin.”

Yes, I know that even neurotypical kids “have a favorite color.” On the other hand, if you board a subway and find that all the yellow seats are taken, can you expect your neurotypical kid to panic and run out the closing subway doors, without a care whether you are following? If your kid says the moon on his pajama top is yellow, and you suggest it might look more blue, do you assume bedtime will be delayed an hour while he howls inconsolably? Have you ever had to purchase napkins in different colors so that your family could practice sharing the yellows without a meltdown?

And I know that even neurotypical kids “tend to repeat themselves.” On the other hand, unless you live with autism, I am guessing that your kid has never lost awareness and stared into the distance, uttering some combination of words scores of times. I am guessing that your kid does not continue repeating even when he’s alone in a room, his words like a proverbial tree falling in the woods, and then falling again, and then again, and again. I am guessing that your kid’s brain does not get stuck in a groove so deep that he becomes physically unable to cease perseverating. There are times when Martin’s need to repeat himself—“Our President’s name is Obama. O-B-A-M-A. The last letter is A. Obama is the President. Do you know how to spell that? The last letter is A. Our President’s name is Obama. Do you know what our President’s name is? It’s Obama.”—reaches such intensity that, if I were to duct-tape shut his mouth, his arm or leg would have to flail in compensation until he could speak again.

(Don’t panic, dear readers. I’ve never tried any such thing. I just know it’s true.)

“All kids” do a lot of things. But they don’t do them like a kid on the spectrum does.

So what does help? What should someone say, if not “All kids do that”?

A friend of mine (let’s call him Ted) once lost several family members in a house fire. Ted and I lived more than a thousand miles apart at the time, so I wasn’t present for the immediate aftermath or the funeral. A few weeks later, when it was time for me to call, I asked another friend, Deb, what I should say to Ted. Deb is a minister, she’s wise, and her own father had died recently. She counseled (I’m paraphrasing):

“Say you’re sorry about the loss, and then talk about anything else. Follow his lead. When you’re grieving, distraction is a blessing.”

I called Ted and said I was so sorry for his loss and wished we lived closer together. He responded by asking how I was doing, and the conversation moved naturally to catching up on each other’s latest activities. We talked jobs, law (two attorneys, boring!), mutual acquaintances. Once, after a pause in the conversation, Ted said, “You know, they were so close to the door when they collapsed. It was the smoke. They almost made it out,” and I knew that Deb had been right. Ted’s mind was so consumed with loss that the twenty minutes we’d just spent talking about other topics were like a vacation for him. And immediately after saying, “They almost made it out,” Ted asked if I’d seen some movie over the summer. The house fire did not come up again.

When you encounter me, know that for at least 23 of the preceding 24 hours, I have had almost nothing on my mind except autism and recovery. I’ve been giving pills, cooking special foods, corresponding with parents on-line, reading about the latest treatments, cleaning air purifiers, mixing clay baths, filtering water, completing HANDLE exercises and concocting RDI games, fighting for a special-education placement, juggling therapy appointments, navigating social-work bureaucracy, keeping Martin’s doctor up to date, and worrying about what vaccinations are doing to our children.

You can ask me how Martin is doing. I will respond, “We have our ups and downs,” maybe add one or two recent achievements, and then move on. Here are suggested topics I would probably rather discuss than Martin’s autism:

•            How are the Rangers play-off chances looking? Will Lundqvist win the Vezina a second time?

•            Why is it still winter at the end of April?

•            Is the new Jackie Robinson movie melodramatic? Does melodrama ruin a good story? Did it ruin Argo?

•            Who is going to be the next mayor of New York City?

•            WNYC reported that 70% of home sales in Brownstone Brooklyn are all-cash deals right now. Seriously, 70%?

•            Is it okay to put a cat on Prozac?

You get the idea. There are a million things to talk about that are not autism.

And if you really, really want to talk about autism, say you support us. Adrian’s mother once set the gold standard in that regard. Adrian was visiting his country of origin and staying in the family home. One evening he and his parents and siblings crowded around a computer to Skype with me and Martin back here in the States. As it happened, that day Martin was at his worst. He would not sit with me or look at the computer. He failed to respond to any questions, or even acknowledge his father and grandparents and aunts and uncle on the screen. After 30 seconds I gave up and released Martin, who jogged around the room, yelling gibberish.

It was a painful moment for me, and though he didn’t say anything, I could tell it was painful for Adrian, too.

Evidently, so could Adrian’s mother.

After we finished with Skype, Adrian went out to dinner with friends. When he returned to the family home that evening, everyone else was in bed. On the kitchen counter was a note from his mother. Loosely translated:

“Martin will get better. I believe in what you’re doing. Love from Mamá.”

Next to the note was a plate with a cookie.

That’s all we really want, any of us, right?

A little faith, and a cookie.

Thinking Inside the Box

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Earlier this week, Martin entered the apartment with me and discovered that I’d left a box on the kitchen counter. It was nothing special, just an Internet purchase I had not opened since it arrived that morning.

Martin poked the box, looked at me, and asked casually—note that I try to avoid adverbs, so if I’m using one, read it in emphatic italics: So help me, he asked it casually—“Mommy, what’s in this box?”

The question was spot-on. It was relevant, directed (including eye contact), and succinct. He even got the intonation right.

Not impressed? Get a kid with autism.

Martin’s verbal skills are outstanding these past couple weeks. Like any parent of a recovering child, I’m digging through my notes, supplementation charts, lists of interventions, and so forth, trying to pinpoint what underlies the improvement. As usual, I have no idea.

Still, I love it when something’s going right.

Disney

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Two families we know with boys on the spectrum have made repeated trips to Disney World in Orlando. All four parents report hassle-free, autism-friendly vacations: luggage and organic groceries delivered directly to your villa (“Check a suitcase at LaGuardia. It shows up in your room!”); passes to skip the long lines for attractions; and a mix of exciting activities and, outside the main park, calmer spaces.

Adrian and I are considering taking Martin to Disneyworld. For me at least, I don’t want to go because I love Snow White or think Martin will be psyched for a magical castle. I want to do a Disney vacation with Martin because a Disney vacation is what American kids do. Right? Martin’s childhood, so far, has bypassed the standard markers. He attends a special school, he swallows a million pills and oils, he spends his afternoons in therapy, his friends have diagnoses, and he can’t eat—well, he’s not allowed to eat candy, or refined sugar, or McDonald’s, or processed food, or pizza, or anything much else I see in the hands of kids.

But he can go to Disney.

Despite the endorsement of other ASD families, we’ve been worried about whether Disneyworld really makes sense. It’s crowded. Noisy. Flashy. Crushing. Maybe the theme park would just overwhelm Martin.

Back in November, Superstorm Sandy led to an unplanned week without school here in New York City. In compensation, Martin’s school lost the scheduled February break but tacked two extra days onto the Easter break, and Martin ended up with eleven consecutive days without class. Martin and I utilized this vacation bonanza for his first-ever West Coast visit, to my brother Rudy and his wife in Laguna Beach.

Rudy came up with a great idea: As we were in Southern California anyway, why not take Martin to Disneyland? It could be like a trial run, a few hours at the original theme park that now seems like a junior version of the Orlando behemoth.

I jumped at the suggestion. On a Thursday morning Rudy and I collected Martin, his stuffed elephant, his afternoon supplements, and his special food and drove to Anaheim. We were headed, as we put it for Martin, to Mickey’s house.

I am pleased to report success.

The ticket agent gave me and Rudy and Martin big “I’m celebrating!” buttons; Martin insisted on pinning two buttons to his loose T-shirt, where they dangled all day. Inside the park he selected a fuzzy blue Sorcerer’s Apprentice hat (with mouse ears) to buy, and although it was 80 degrees and the thing was like a quilt wrapped around his head, he wore that all day, too. We stopped by guest relations. I explained that my son has autism and gave a little report on his strengths and weaknesses. The representative gave us an “accommodations” ticket allowing all three of us to use the special-entry lines, which are much shorter than the regular lines. And from there, we hit the rides.

With all the bustle, Martin was more distracted than usual as he wandered through the crowds. Nevertheless, he beamed. He rode “it’s a small world,” where he was scared to be in a boat but liked the children singing and the floating moon; flying Dumbo elephants, where Rudy showed him how to use the altitude lever; the Jungle Cruise, where the boat operator warned me before he fired a fake gun; and the carousel, which he handled like a professional based on weekends of carousel riding in Brooklyn. His favorite attractions were musical performances and the thrice-climbed Tarzan’s Treehouse.

Martin even survived the Roger Rabbit ride. Rudy and I assumed that because the Roger Rabbit thing was in Toontown, it would be mild. Holy cow, was that a mistake. It turned out to be a spinning car whipping us in circles through strobe lights, screaming, and demonic-looking animated characters. I was scared. Martin clung to me but didn’t cry.

We stayed in the park for seven hours. Seven hours! Martin got to bed late that night and slept well.

Two days later, on Saturday, Adrian surprised us all by flying into LAX. He’d ended up in Northern California on business and was able to sneak away for the weekend. Martin and I picked him up at the airport and then headed directly back to Disneyland for another seven-hour visit.

“Did you like Mickey’s house?” Adrian asked Saturday evening, back at my brother and sister-in-law’s house. “Was it fun?”

“Yes!” Martin said. He smiled.

“Would you like to go back to Mickey’s house again tomorrow?”

“No!” Martin said. He still smiled.

I think he was exhausted.

Everything in moderation. I’m sure that, by the time I manage to put together a family trip to Orlando, he’ll be ready again.

In his Sorcerer's Apprentice hat, Martin enjoys music from the "New Orleans" bandshell. The drummer threw Martin some beads.

In his Sorcerer’s Apprentice hat, Martin enjoys music from the “New Orleans” bandshell. The drummer threw Martin some beads.

During the Saturday (second) visit to Disneyland, Martin and I headed once again into Tarzan's Treehouse.

During the Saturday (second) visit to Disneyland, Martin and I headed once again into Tarzan’s Treehouse.

Back outside Disneyland, Martin and I strolled Balboa Island with Rudy and his wife (in front of us). I think we're imitating them.

Back outside Disneyland, Martin and I strolled Balboa Island with Rudy and his wife (in front of us). I think we’re imitating them.

Martin enjoyed the views of Southern California. This shot was taken on Balboa Island also.

Martin enjoyed the views of Southern California. This shot was taken on Balboa Island also.

After we returned to New York, Martin enjoyed carrying his Mickey Mouse doll, as here on the Lower East Side with Adrian.

After we returned to New York, Martin enjoyed carrying his Mickey Mouse doll, as here on the Lower East Side with Adrian.

 

 

 

 

Perseveration. Perseveration. Perseveration. Perseveration.

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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.