Why, Hello Again

Posted on January 15, 2014 by findingmykid

How does one restart blogging?

I’ve been thinking about that. Mostly while lying awake at night and also wondering why the [redacted] I’m not blogging. But still.

And ta-da!: The plan I’ve conjured, the blogging redux after seasons of silence:

An update.

I’ll offer my readers—in the event I retain any—tidbits about where we stand now, and then, my blog restarted, I’ll pretend like I never was away.

1. We’ve left the City for the suburbs. New York, New York, no more. We moved June 4 to a ranch house, situated on 1.15 acres in a town where many of our neighbors prefer another NHL team to the New York Rangers. An autism diagnosis was one thing. This kind of upheaval—it’s disconcerting, to say the least.

2. Martin attends kindergarten at a private school for children with learning differences. His class has twelve pupils and multiple instructors. Adrian and I feel extremely lucky that Martin has the chance to attend such a school, never more so than this past weekend, when we attended one classmate’s birthday party and watched Martin frolic with his new best friends.

3. Martin receives traditional occupational, physical, and speech therapy at his school. Saturday mornings I drive him into the City for two sessions of Anat Baniel Method (ABM) therapy. We continue working with a HANDLE therapist, and doing home-based exercises activities on the RDI approach. One evening per week Martin takes piano and drum lessons (the latter by his own initiative) with a certified music therapist.

4. We have not yet recovered Martin. We have, however, made progress, and a good deal of it:

• Though he retains some patterns, Martin’s speech is rarely rote anymore. He has some quirks, such as substituting “but because” for “because” and adding “for” where it doesn’t belong, as in, “Can I have a piece of paper for to draw a picture on it?” Nonetheless, he can express his wishes, wants, and needs verbally, and well.

• Martin can engage in conversation of six or more exchanges, so long as he is answering the questions (not asking them, which is a level higher). Here is an exemplar talk, which we had when he arrived home one day last week:

“How was school today?”

“It was good.”

“Did anything special happen?”

“We had a surprise reader!”

“Oh, yeah! Who was the surprise reader?”

“It was Quinn’s family.”

“Quinn’s family? His whole family came, not just his mommy or daddy?”

“His whole family came.”

“Wow! What was the book about?”

“It was about snowmen.”

“Did you like it?”

“Yes. I liked it. We made snowmen!”

Note that Martin, who once just “said things,” was speaking accurately. I confirmed later that Quinn’s mother, father, and older sister had all come to do the surprise reading, that they’d read a book about snowmen, and that they’d helped the class with a snowman-making craft project.

• Lethargy is a thing of the past, and Martin’s “floppiness”—his tendency to fall onto anything within reach—diminishes every day. His core strength has improved, insofar as he is as likely to sit up as to slouch. His manual dexterity is such that he grips a pen appropriately for writing and drawing, he can manipulate small items like pills, and he uses his hands independently for drumming. (That last achievement might not pertain to dexterity per se.)

• Martin takes a keen interest in his peers: what they eat, how they play, the structure of their families, where they live. He requests play dates. What he still lacks is a solid understanding of how to interact with friends. We’re working on that.

We vacationed recently at a resort area. When Martin was having trouble engaging any other child there, I would approach the child’s parent and say something like, “I think my son would like to play with yours. My son has Asperger’s, and he’s never quite sure how to go about making new friends.” “Aperger’s” sounds much less scary than that other A word, I think it’s pretty accurate for where Martin is now, and the parents I approached responded uniformly positively. Martin made a couple of “vacation friends” that way.

5. Martin still exhibits “autism” behaviors. He perseverates. A lot. This has been an issue forever. Right now he prattles endlessly about traffic lights, hair length, the time, and the moon. He also has three prominent stims (self-stimulatory behaviors), which become more pronounced when he’s tired or detoxing. The stims are running back and forth, making a slurp! sound by sucking air through his lips, and carrying or playing musical instruments. And of course, Martin can be rigid. He wants to wear his blue vest every day, drive one particular route home, read Pete the Cat or Knuffle Bunny books every night.

6. I now understand “the long haul.” I think that, when I started the process of recovering my son, I didn’t really comprehend what how long one might need to haul. The mother who introduced me to biomedical intervention had largely recovered her son within two years, and was done with the process entirely within three years. I failed to grasp that her family’s timing was exceptional. I thought that by kindergarten we’d be done.

My family has been at this three years now, chipping away at the underlying health issues that exhibit themselves as “autism” in Martin. My son has made staggering process. If we never achieve anything more, I will know that our time and money have been well spent. Still, he is not recovered, and much work remains. Fortunately, I no longer fear that some mythical window will close while Martin is five (he’s five now), or seven, or any age. A mother of a recovered 14-year-old told me recently, “Our best year was when he was 12. Twelve years old is when he made the most progress.” Twelve years old is a long, long way off for Martin. If that turns out to be our best year, so be it. We’ll get there.

7. This year, 2014, is going to be extraordinary. Don’t ask me how I know. I can say this: I woke on January 1 with that feeling, and it has not left me. Martin will hit new milestones, and so will I. This past weekend I met with an old friend from law school. My friend used to work in venture capital but for the last year or two has been searching for a new path, something more creative. I told him that I haven’t been doing much writing, or much of anything else, because I’ve been so focused on Martin’s needs. Without warning, he turned to me and vocalized something I already knew: “2014 is going to be a banner year. For you, for your son, for me. I think this is our year.”

See you soon.

Madison Square [Expletive] Garden

Posted on May 28, 2013 by findingmykid

When I found out I was pregnant, I began to dream about what my child and I would share.

Maybe he would be a vegan. Maybe he would attend my alma mater. Maybe he would learn German. Maybe he would suck at all things involving music.

Maybe he would learn to love what I love, and want to do what I do.

What I love is ice hockey, and what I do is watch the New York Rangers. I have a season subscription “mini-plan,” which entitles me and a companion to show up to approximately one-quarter of the Rangers’ home games, occupy two seats very near Henrik Lundqvist (first and third period), and whoop like a drunken sailor.

Martin has been doing so well lately that I decided that the time has arrived. On April 27, a Saturday, I brought Martin to Madison Square Garden to watch the Rangers play the New Jersey Devils. It seemed like the perfect starter experience: It was the last game of the regular season, it was a 3:00 pm matinee, and although the Rangers and Devils are usually a good rivalry, the Rangers had already made the play-offs and the Devils were already ruled out, leaving little at stake and perhaps a less-rowdy crowd.

Martin and I arrived by 2:00. I wanted to bring him in before the big crush of fans, and to acclimate him before the cheering.

The first thing he asked for was a bottle of water, which I bought him, totally forgetting that the Garden vendors take the bottle cap away and make the bottle a giant pain in the neck to carry without spilling.

Next we headed to a fan shop to buy Martin a new Rangers jersey. Martin was already wearing a blue toddler-sized #30 Henrik Lundqvist jersey, but that was too small because he’d owned it since—well, in any event, since he became old enough for me to swaddle him in a Henrik Lundqvist jersey, sometime around his birth. At the shop I displayed the available boy-sized jerseys. Martin’s choices were a classic navy-blue #61 Rick Nash (master of the goal-scoring universe), an away-game white #24 Ryan Callahan (Cap’n Cally! upstate power!), or a home-ice blue #30 Henrik Lundqvist (yes, Henrik Lundqvist). Martin waffled for ten minutes before settling on the #30 Lundqvist: a larger version of what he already was wearing. Outside the store, he refused to wear the new, larger jersey like I asked. Instead, he spilled half the capless bottle of water and cried because it made his pants wet.

Five minutes later we were in our seats. Both teams were skating around the rink, pre-game practicing. Immediately I realized that, when I attend games with other adults, I do not accurately perceive the level of noise and other stimulation inside the Garden. It is like a rock concert in there. Music blares, the announcer yells, fans scream, lights flash, sometimes the entire inner arena goes dark.

With Martin by my side, these usually exciting aspects became threatening. He sat cross-legged in his seat, motionless except for intermittently covering his ears. I lifted him to see over the fans standing in front of us. I showed him Rangers in their blue jerseys and Devils in their red jerseys, each team skating around its own half. I pointed out Lundqvist in goal, wearing #30 just like Martin.

Martin continued covering his ears, then wrapped his arms around my neck and squeezed.

We retreated to the concessions level. I purchased a Brooklyn Lager in a cup, with a straw, because I am cool, and sipped some while Martin gazed through floor-to-ceiling external windows. I suggested returning to our seats. He replied, “I don’t want to go back to our seats.” We waited a while longer.

Once the first puck had dropped and play was underway, I insisted on a second try at the inner arena. Martin came along, glumly. He sat cross-legged again, and sometimes slouched down or flopped onto me. I followed the game as best I could. Ryan Callahan, the Rangers’ captain, flipped the puck into the Devils’ net for the game’s first score. The noise level rose even higher. I picked Martin up and bounced him along to the Rangers fans’ chant: “Goooo-o-o-o-o-al! Goooo-o-o-o-o-al! Hey, HEY, hey hey hey hey! Hey, HEY, hey hey hey hey! Hey, HEY, hey hey hey hey!” He covered his ears.

I can’t say that Martin was enjoying himself. But he kept it together.

Near the end of the first period, Martin reached forward and took a water bottle from a drink holder, thinking it was his own. Instead, Martin’s bottle was one drink holder to the left, and the bottle he grabbed belonged to a boy about ten years old, in the seat next to Martin. That boy seized the bottle from Martin’s hands, forcefully. (I think he might have been wary of Martin because of the slouching and flopping.) I apologized to the boy and handed Martin the correct bottle, and I could see that being startled that way had pushed Martin toward his breaking point.

During first intermission I escorted Martin to the quietest area I could find and asked if he would like to go home. He said yes. I explained that if we left we would not be able to come back into the arena and asked whether, knowing that, he still wanted to go home. He said yes. And so we headed for the ground-floor exits, where I told a security guard, “My kid isn’t feeling well. We’re going to watch the rest of the game from home.”

In the subway, Martin had what I think was a delayed-reaction meltdown. He became fixated on dictating which passengers could get off at which stations, and threw a tantrum when, inevitably, the passengers got off at the stations of their own choosing. I took Martin on my lap, let him cry, and then successfully distracted him by asking him to name the stops between Madison Square Garden and our home.

If you are the parent of a neurotypical child, the afternoon I’ve just described might sound like a disaster. We saw only one period of hockey, and I had to abandon more than half a beer, its forlorn straw sprouting toward nowhere.

To me, it was no disaster. It was a darn good start:

• Martin must have been overwhelmed by the noise, lights, and crowds. I can hardly imagine an environment with more external stimuli. Nevertheless, he held it together. He did not freak out.

• Martin returned with me to the seats even when he didn’t want to. I didn’t have to force him or bargain. He acceded to my wishes.

• With all that was going on, I wasn’t sure Martin would really comprehend what was happening around him. But he did. Ten minutes into the game, he had turned to me, in all the hubbub, and said, “Mommy, it’s just like when we watch hockey on television.” Ah-ha! We were experiencing hockey together!

This season, one period. Next season, two?

As Martin continues to recover, we will encounter more that he can share. Actually share, as in emotions exchanged. Adrian will take him to the opera. My brother Eddie will teach him to play backgammon. My stepfather will show him how to swing a golf club. My mother-in-law will make him sweat through Bikram Yoga.

The Rangers game was no unmitigated success.

Still, there was a time, not long after Martin’s diagnosis, when I wondered whether I would ever be able to take him to a restaurant in peace again.

I just took him to Madison Square Garden. Unassisted. If I were given to writing profanity, I would drop an F-bomb between Square and Garden, for emphasis, because that’s the kind of big deal I’m talking about.

Madison Square [Expletive] Garden.

OMG! Is that Henrik Lundqvist? No, wait. It's my Martin, checking out the Garden.

OMGosh! Is that Henrik Lundqvist? No, wait. It’s my Martin, checking out the Garden.

My Rainbow

Posted on May 6, 2013 by findingmykid

Martin and I were riding the subway Saturday morning. We had with us a rainbow that he had made in school out of construction paper and Froot Loops. (Ugh.) The following conversation ensued:

Me: “Martin, do you remember where you got this rainbow?”

Martin: “I made it in school.”

Me: “You know, Martin, rainbows make people happy—which kind of means that you’re my rainbow, because you make me so very happy.”

Martin: “I’m your rainbow.”

Me: “I think you are.”

Martin: “My name is Rainbow.”

Me: “Your name is Rainbow? Really?”

Martin: “No.” [Laughs.] “My name is Martin. I’m being a rainbow.”

Martin said those things, in that order. My kid said those things.

In professional ice hockey there exists an unofficial (and unsanctioned and probably unadvisable; check out The Last Gladiators) player role, known as an enforcer. An enforcer’s job is to keep the opposing team from playing too rough. For example, if an enforcer sees an opponent intentionally late-check a star player, the enforcer might respond by grabbing that opponent by the jersey and punching him several times, as a warning to leave the star player alone.

(Don’t be put off. If you’re not already an ice hockey fan, do please start watching. The combination of grace, strategy, and grit that carries a hockey team to victory resembles the traits needed to recover a child from autism. Honestly.)

Have you heard of the crazy Fred Phelps family from Topeka, Kansas? These are the people who—despite lacking affiliation with any Baptist denomination, and as far as I can tell, despite following none of Jesus’ major teachings—call themselves the “Westboro Baptist Church” and protest at high-profile or military funerals because, they claim, God opposes homosexuality. (I realize that sentence lacks substantive logical foundation. That’s intentional.)

Apparently these Phelps people threatened to show up at the funerals for victims of the recent Boston Marathon bombings. I saw something circulating on Facebook that I should have downloaded, because I can’t find it now. It was a picture of a Boston Bruins enforcer, during a game, on his knees, straddling an opposing player whose back was on the ice. The enforcer had his gloves off, which is dangerous because punches fall softer when the fist is padded by a hockey glove, and he was plainly beating the daylights out of the opposing player, whom he’d rendered defenseless. The caption under the picture said something along the lines of, “This is what we do to hockey teams we don’t like in Boston. Please, come protest a funeral.”

When Martin was diagnosed with autism, at 27 months, he could label objects and people and colors, and he could speak in echolalia, but he had no functional language. At 36 months, he had begun developing functional language but could not grasp concepts like first and second person; he said “I” when he meant “you,” and “you” when he meant “I.” By 48 months, he could respond to questions but could not engage in dialogue, i.e., carry a conversation beyond one response.

On Saturday, Martin sustained that rainbow discussion. He maintained consistent eye contact throughout. He ended by drawing a distinction between being called Rainbow and being a rainbow.

Please, come tell me recovery from autism is not possible.

Notes on a Wednesday

Posted on April 30, 2013 by findingmykid

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

Posted on April 23, 2013 by findingmykid

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

Posted on April 18, 2013 by findingmykid

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

Posted on April 16, 2013 by findingmykid

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.

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.

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.

Perseveration. Perseveration. Perseveration. Perseveration.

Posted on April 15, 2013 by findingmykid

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.

Gatekeeping

Posted on March 11, 2013 by findingmykid

Because the New York City Department of Education classifies Martin as a “preschooler with a disability,” he receives yellow-bus transportation to his special-needs preschool, at no cost to us.

(I expect at least one email reminding me that Martin’s services are not “at no cost to us,” because those services are covered by taxes, which we pay. Okay.)

The school bus—it’s a “short bus,” and now I resent the “short bus” jokes I made as a child—stops between 8:15 and 8:30 a.m. Our apartment is a fourth-floor walk-up. It can take some time to get distracted Martin down those stairs, so instead of waiting in the apartment, we try to have him outside by 8:12. Or so. You know how it is. Most mornings Adrian brings Martin down and departs for his office after the bus comes. If Adrian is traveling or has to leave earlier, I bring Martin down.

There is a public elementary school on our block. It has two special-education classrooms but serves predominantly typically developing children. Between 8:00 and 9:00 a.m. those backpack-burdened pupils (who are not entitled to bus transportation; that’s different in New York City than elsewhere) walk past our building, alone or with their parents or guardians.

Picture the scene: Martin and I wait within the small fenced area in front of our vestibule, while typically developing kids stream down the sidewalk, just outside the fence. They are a few feet away from us, but separated.

Occasionally the metaphor overpowers me. I feel bad, with a physical symbol—a black wrought-iron fence, for crying out loud—demarcating our space from the path for typically developing kids and their parents.

My solution is to open the gate and stand or sit, with Martin, on the curb where the gate would be if closed.

The gate itself opens outward and therefore becomes an obstacle for the school children to circumvent. Tough. It’s hard enough to have a kid whose autism separates him from other kids. I don’t need an actual fence doing the same.

I wonder: Does this seem strange, that I have to open a fence gate to feel better about our situation?

It’s the little things, right?

Martin and I head out into the open, looking for some fun as winter fades.

Martin shows Adrian how he can write letters in the sand.

Why? Why? And While We’re at It, What the … ?

Posted on February 4, 2013 by findingmykid

Adrian seldom comes home on weeknights before Martin has gone to bed. About a month ago, on an early-January evening, he surprised us by arriving at 5:45 pm, just as Martin was starting dinner.

Happy Martin.

The next afternoon, January 9, as Martin and I were returning from his hippotherapy session in New Jersey, I called Adrian from the car. We chatted for a few minutes by speakerphone. Martin (softly, almost inaudibly, as is his way) called Hi, Daddy! from the backseat.

After I hung up, Martin asked, “My daddy is where?”

“Daddy is at his office working.”

And then…

“My daddy, why he don’t come home?”

The words were jumbled, but the intent was clear: Martin asked his first-ever Why? question.

A week later, January 17, Martin had to have blood drawn at his doctor’s office. When it was over, as a reward, the doctor let Martin pick from a basket of toys. Martin selected a yellow—everything must be yellow right now, even his subway seat—“sticky foot,” a rubbery, goo-coated, miniature foot, with a tail, meant to be hurled at a wall so that it can creep vertically to the floor. (Yes, that description stinks. How to describe a sticky foot?) For the rest of the doctor visit, Martin played with the sticky foot, not hurling it at a wall but stretching it long, plucking the tail like a guitar string, rolling the stickiness betwixt his fingers.

The sticky foot was still in his hand when we left the office. In the parking lot, Martin asked:

“Mommy, what is this?”

Another first! Martin frequently asks, “What do you call this?” or, “Do you know how to call this?” or, “How do you say [whatever] in Spanish?” But he’s never before gone for the gold, i.e., asked what an object is, how it’s used or what purpose it possesses.

I responded: “It’s a sticky foot.”

If autism recovery were perfect, if every step forwarded heralded another step forward, Martin’s next question would have been, “What’s a sticky foot?”

Alas, it was not. But it was still pretty good. He yelled, “A sticky foot! A sticky foot!” and then asked, “Can I bring it on Saturday?”

Saturdays Martin participates in Ready, Set, Play!, a therapeutic playgroup. Every Ready, Set, Play! participant brings a show-and-tell item. Until the sticky-foot incident, I always chose Martin’s show-and-tell for him, packing whatever small toy or token seemed interesting that week. Now Martin was telling me that he wanted to select his own show-and-tell, and that this week it would be the sticky foot.

I didn’t know what he planned to “tell” about the sticky foot, as he evidently had no idea what the hell a sticky foot is for. Nevertheless, we were making progress.

So: “Why?” and “What is?” January 9 and January 17, respectively.

Martin does not yet answer Why? questions. Nor did he immediately pose any other Why? or What is? inquiry. That’s his way. Last Thanksgiving, Martin responded to a question with, “I don’t know.” More than a month passed before I heard “I don’t know” from him again, and then it stormed into common usage. Now he’s comfortable with “I don’t know” in all sorts of contexts.

Four weeks passed from January 9 until today, February 4, a Monday. On Monday evenings Samara stays with Martin while I go out. Monday is my night off. Most weeks I depart by 5:00 pm or so and have dinner with a girlfriend.

Tonight I’m hunkered in a local wine bar, exchanging goofy emails with Adrian and typing my blog, and that meant I left later.

Around 6:45 pm, I was helping Samara finish Martin’s evening supplements. Martin, his mouth full of pre-sprouted mushroom-garlic quinoa, turned to me (!) and asked, “Mommy, why you’re still here?”

Why? question No. 2. Rock and roll. I believe he’ll ask Why? more and more now, and maybe soon, with the understanding the question brings, Martin may even answer a Why? question.

Epilogue: Saturday, January 19, as we were leaving for Ready, Set, Play!, I produced the sticky foot and declared, “Here’s your show-and-tell.” Martin took one look, said no, and went to his toy chest for an accordion instead. It took exactly 44 hours for him to lose interest in the sticky foot and change his mind. I guess that’s being four years old.

Finding My Kid

A parent's real-time blog of autism recovery. Start-point is a diagnosis of ASD. End-point is unknown.

Tag Archives: ASD