Martin has had several play dates recently with neurotypical peers, and I’ve felt like the gap is closing. Like he’s in their ballpark. Like despite the language delays, he can, and he wants to, interact.
I am beginning to experience—security.
Enough. I don’t want to jinx anything.
Yesterday’s post—the update on questions—begs a follow-up: an update on imagination.
Before Martin was diagnosed, when we were investigating local preschools, Adrian and I spent twenty minutes in a Montessori classroom for three-through-five-year-olds. There I observed one boy, probably a three-year-old, engaging in several minutes of independent pretend play. He found a cloth square and an empty bottle and employed both to “clean” a mirror, swishing back-and-forth, examining his work and checking (I assume) for smudges, then re-polishing the spots he’d “missed.” It impressed me, to see him working so hard at an imaginary task. I recall thinking, Gosh, Martin doesn’t play like that, and then telling myself, Give him time.
Almost 18 months have passed since we visited that Montessori classroom, and Martin still doesn’t play like that. (And now, of course, I believe that the answer lies with intervention, more so than with time.) Imaginative play, it seems to me, does not emerge spontaneously from the linear thinking of an ASD kid. At least, imaginative play in the traditional, “creative” sense does not emerge spontaneously; on the other hand, I’ve seen many examples of quasi-imagination in ASD kids and adults, in terms of viewing problems or issues in unexpected ways.
Martin may be turning a corner in this arena, too. Over the past four days, I have jotted down four instances of Martin apparently using his imagination.
1. At his cranio-sacral therapist’s office, Martin picked up a bunny toy that makes a bell-like sound when jostled. Martin shook the bunny repeatedly, heard the sound, and said, “The bunny is playing the xylophone.” Then he moved the bunny to another area, shook it again, and said, “The bunny is playing the xylophone outside.”
2. Martin was playing with a favorite toy, a pirate ship that he calls a “sail boat.” He rearranged the positions of the wooden pirate figures, then told me, “The pirates are sleeping in the boat.”
3. Martin loves guitars and often has one in hand, anything from a three-inch Christmas tree ornament in the shape of a guitar to a near full-size instrument. Yesterday, walking around with a guitar, he encountered an old stuffed bunny. He paired the toys and announced, “The bunny is going to play the guitar.”
4. On his Thomas & Friends train set, sitting alongside Thomas and Molly and Henry and Rosie and the others, Martin keeps a couple of miniature NYC Transit subway cars. One from the 6 line and one from the C line, to be exact. I noticed him playing with those two cars and asked what he was doing. Martin responded, “The C train is holding hands.” (The C train, I assume, was holding hands with the 6 train. Martin did not specify.)
If someone had told me, two years ago, that I would grab a sheet of paper to make a note every time my son shows imagination, I would have scoffed.
No scoffing today. Neural repair happens brick by brick by brick by brick, and it’s important to keep track of what’s being laid where.
Or so I imagine.
Martin, checking out some videos with his cousin and Adrian.
Martin doesn’t ask questions yet. Questions are non-linear language, and (as I’ve discovered) they are complex. So far, Martin uses only imperative and declarative speech. For example, if he can’t find his flute, instead of asking, “Where’s the flute?”, he repeats, “I want the flute. I want the flute,” until someone helps him find the flute.
I’ve got some yes/no requests from him, mostly by rote. We have a lot of exchanges like this:
“I want more tea.”
“It would be nice if you would ask me.”
“Can I have more tea?”
I don’t really count those requests as questions, per se, because they are (1) scripted and (2) not seeking information.
In the past week, I’ve witnessed the first glimmers that we might be turning the corner (and I hope I’m not getting ahead of myself). Tuesday, as he and I were walking together, Martin spotted a jet in the sky. “A plane!” he blurted (as usual), pointing (a newer development). I replied, “I see it, too.” Then Martin said, “Where is the plane going?” I’m not certain Martin was really looking for an answer; he seemed almost uninterested even while inquiring. And I wondered whether, “Where is the plane going?” wasn’t a scripted question, repeating part of a school exercise. Nevertheless, I made a big deal of responding. Saying I wished I knew. Observing the size of the plane and guessing the possible destinations. Trying to make Martin feel rewarded for (possibly) asking a question.
Did it work? Maybe. Wednesday afternoon Martin and I were to meet Adrian at the airport, to fly home. (We’d made a family trip to Chicago, where Adrian had some work to complete before coming to O’Hare.) Martin hadn’t slept well the night before and was restless, so I made a big deal about meeting Adrian and how happy we would be. Almost as soon as we entered the airport, before we reached the self-check-in machines, Martin asked, “Where is Daddy?” He did not look directly at me while saying those words, but this time the question seemed authentic. Martin expected his father, and upon not finding him, wondered what the deal was. Immediately I knelt to catch Martin’s eye and said, “Let’s check in and clear security. I bet we’ll find him at the gate.”
I’ll report on more questions as they come. I’m looking forward to a day when Martin asks questions non-stop, at which time I’ll post on the topic How Do I Shut My Kid Up?
Last weekend my law-school roommate, who lives in New Jersey, brought her daughter, Mieko, over to play with Martin. Mieko is five months older than Martin, and the most wonderfully bossy little girl, and one day she’s going to marry Martin. I’m quite confident of this; I’ve been planning the wedding since Martin was born.
(“‘The engagement between them is of a peculiar kind. From their infancy, they have been intended for each other. It was the favourite wish of his mother, as well as hers. While in their cradles, we planned the union . . . .'” Jane Austen, Pride and Prejudice.)
Those far-off nuptials, however, are not the topic du jour. Instead, the day after I dropped my erstwhile roommate and her daughter off at the New Jersey ferry, I received a message through Facebook, which I reprint here, unedited other than the pseudonyms:
It was great seeing you, Adrian, and Martin yesterday.
I wanted to tell you something in the car and didn’t get a chance to. I remember you told me a while ago that Martin could not participate in a kiddie gym class because he was not able to follow what the other kids were doing and would go off and do his own thing. Well, yesterday, I noticed that that was not an issue for Martin anymore. Remember when we were having our jam session? I was on acoustic guitar, Mieko was on electric guitar, you were on tambourine, and Martin was on harmonica. He was definitely aware that we were all playing music together. Not only was he aware that we were having a jam session, but he also noticed a certain someone (Adrian) who was off doing his own thing and was not participating in the group activity! He then proceeded to pull over Adrian to the piano so that everyone was participating together!
What was impressive was that we weren’t all doing the same activity, like everyone hopping on one foot or everyone clapping hands. All of us were each doing something different with different instruments, and yet Martin recognized it as a coordinated activity where each person, doing something different, was together working toward the same goal of creating music. So playing the piano was acceptable to him, but looking at the computer screen was not. I am no expert on child development, but doesn’t that require an awareness of others at a level that three-year-olds don’t always have?
Anyway, the jam session was very fun and very cool!
I take issue with only one part of this message: With twin seven-year-old sons at home, plus Mieko, my roommate by now is an expert on child development. And that makes what she wrote all the better.
A boy and his cat. Martin and George, tuckered out from a hard day of playing with friends.
“Wow! The sun is really reflecting light off that building,” I remarked at breakfast last Thursday. I made a show of gawking through the kitchen window.
Martin, seated at the counter, fiddled another second with a toy, then turned to look out the window.
Score!
“It’s so bright it kind of hurts my eyes,” I said.
Martin shifted his gaze to me and replied, “It’s bright.”
Double score! I scrawled a few words in my countertop notebook and let several minutes pass while Martin ate breakfast.
“When the sun is still rising, it’s much lighter outside these windows”—I inclined my head to the kitchen window and other west-facing windows—“than it is outside those windows.” I finished with a dramatic point across the room to the east-facing windows.
Martin checked the kitchen window once more, then compared the east-facing windows.
Score! I made another note and let a few more minutes pass.
“It looks like it’s starting to get cloudy,” I said.
Pause.
Nothing.
I decided to add some “scaffolding.”
“I was looking out the window,” I said, “and I noticed that it looks like it’s starting to get cloudy.”
My words alerted Martin. He looked at me and then out the window. “It’s cloudy,” he said.
Score!
And so we went, through breakfast. Observation. Reaction. My gaze. Martin’s gaze.
This odd game is part of a behavioral therapy, Relationship Development Intervention, or RDI, that we do with Martin. Although I meet regularly with our RDI consultant, the program is intended to be family-based and driven through everyday interactions. It rests upon “guided participation,” wherein I serve as a mentor to Martin, helping him master the basics of social interaction. RDI for ASD covers approximately a gazillion milestones, and I have found it challenging to get my arms around the program.
Nevertheless, our consultant is patient, and on occasions like last Thursday’s breakfast, I see the logic behind the RDI strategy. Right now we’re working on Martin’s ability to read facial expressions. Ideally, Martin would show sustained interest in me during breakfast. He would check my face regularly, and if he noticed me staring in some direction, he’d also look there, for clues to what’s going on.
That’s what neurotypical persons generally do. For example, this afternoon I walked into my bank and saw several patrons and staff craning their necks to look at the high ceiling. So I looked, too. I just did. And before I had a son with ASD, I would never have thought twice about the moment. (A ceiling vent was emitting ash, it turned out.)
Martin, on the other hand, does not automatically make such observations, at least not yet. So I’m teaching him to do so. I look out the window. I give Martin a chance to notice and to look out the window, too. If he doesn’t, then I add some “scaffolding”—that’s RDI-speak for “extra help”—by making some verbal observation. I give Martin another chance to catch my clues. If he doesn’t, it’s time for more scaffolding. I might point, or make my comment more explicit, such as when I said, “I was looking out the window and ….”
At all costs, I avoid using the imperative. Martin, look out the window, is a no-no. So is an imperative hidden in a question, like, Can you look out the window? RDI sets a goal of 20% imperatives, and 80% “observations,” “emotion sharing,” and so forth. That’s probably the toughest component. When you have a child on the spectrum, the day can easily dissolve into 99% imperatives. Martin, eat your breakfast. Martin, chew. Hurry up! Martin, can you put your shoes on? Martin, come here and brush your teeth.
We’re also playing little games to work on facial observations. Over the weekend I placed three identical boxes upside down on the rug and hid Martin’s miniature guitar under one. With facial expression alone I indicated which box was harboring the guitar.
Martin showed no interest whatsoever.
I scaffolded. I removed one box, arranged the other two on either side of me, and nodded dramatically toward the correct box.
Martin started to get up.
I scaffolded some more. “I think the guitar is there,” I said while nodding.
Martin perked up and lifted the correct box.
Mini-score! Score with extra scaffolding!
I’ve got the mantra ingrained by now: ASD recovery is a marathon, not a sprint.
Even the little victories count.
(Careful readers might be wondering why the rising sun shines brighter through our western windows than our eastern windows, given the sun’s proclivity to rise in the east. The anomaly happens because a taller building blocks our eastern exposure, while our western exposure is open to, across an expanse, office towers whose windows throw the sunbeams back toward us. Ah, city life.)
Martin is riding a bicycle. Though the weather has been mild, it’s still New York City winter, meaning that so far he rides only in our apartment. He zooms around the main room’s hardwood floors, daredevil skidding the curves, calling “I need help!” when he pedals himself into a jam—for example, when he manages to wedge his bicycle between the loveseat and the wine rack, a real hazard for the novice indoor cyclist.
I wanted to post about how Martin learned to ride the bicycle. But as it happens, I had no idea, because the event occurred while Adrian and I were in Israel. Martin stayed home that week with my mother (who appears frequently in this blog) and, for part of the time, with my brother Eddie, a bachelor with an endearing fondness for Martin. (You may recall me waking poor Eddie at midnight and dragging him halfway across Maine on a thermometer quest. He went willingly. Enough said.) So I asked my mother to describe Martin’s learning process. She wrote:
When I was watching Martin in December my youngest son Eddie joined us for five days. Eddie and I decided that it was time for Martin to learn the art of pedaling a tricycle, something that had eluded him up to that point. We drove to Toys “R” Us to buy one and were dismayed to find that tricycles these days all seem to be made of plastic, which was unsatisfactory. We settled instead on a small metal bicycle with training wheels and lots of eye-popping color.
Martin did not seem particularly interested in the bike, but we sat him on it for a few minutes at a time, every so often, with Eddie making Martin’s feet work the pedals (his feet kept slipping off) while I pushed and steered. On the second day Martin was able to keep his feet on the pedals long enough to propel himself two or three yards, but for some reason he would then pedal backwards, which applied the brakes. On the third day we put him on the bike and something seemed to click! Martin pedaled around the apartment effortlessly on his own! Also, to our surprise, steering did not seem to be an issue. It came naturally. Once Martin is able to ride his bike outside, I think it will be only a short time before the training wheels can come off.
I think my mother may be too optimistic—typical grandparent!—about the training wheels coming off, given Martin’s continuing issues with balance. Nevertheless, Martin has achieved something wonderful. First, pedaling a bicycle, especially in unison with steering, takes coordination, and no doubt also improves coordination over time. Second, I’m always looking for activities that build Martin’s strength, given ASD kids’ low muscle tone. It’s a double-blessing to find one that he enjoys so much.
Big thanks to my mother and Eddie for making Martin mobile on two wheels (plus two tinier wheels…).
The week before last I posted about what’s disappeared: lethargy, toe-walking, aimless drifting, low muscle tone, sleep problems, clumsiness, and most of Martin’s echolalia. Those are all behaviors that Martin used to have, that he no longer has, and that popped immediately to mind when Adrian and I were discussing treatment costs.
Not long after publishing that post, I was walking home from Martin’s school, pondering his progress, when I remembered “transitioning.” It was a slap-my-own-forehead moment, like, Oh yeah! Transitioning! Until mid-summer 2011, transitioning—i.e., the ability to stop an activity and begin another—had been one of our biggest concerns. Martin’s teachers at his old school mentioned it constantly; moving from the gym back to the classroom prompted a tantrum, as did moving from circle time to table work, or music to snack. We experienced the challenges at home, too. I needed only mention bedtime or going out or a visitor’s arrival in order to upset Martin.
Martin (like most any toddler, I imagine) still has trouble leaving the playground or his best friend’s house. (A five-minute countdown helps. “Martin, in five minutes it’s time to walk home. Five minutes.” Sixty-second pause. “Martin, in four minutes it’s time to walk home. Four minutes.” And so forth.) It’s been months, however, since straightforward change of activity posed problems.
Transitioning is so far gone as an issue that I didn’t even happen upon it when making the case for what we’ve spent on treatment. And I’m not the only one who forgot. “Transitioning?” Adrian asked when I brought it up later. “That’s right. Geez, that was forever ago.”
With a little more consideration, I’ve come up with other issues so far gone that they didn’t make the initial list of what’s disappeared.
Bolting, for example. I can remember a time when I could not pause to greet a neighbor, because Martin would be half a block away within seconds, never once looking back to check his mother’s location. Now, unless he’s really engrossed in a sandbox or something, Martin makes eye contact even from across a playground, keeping tabs on me. Not quite as close tabs as I keep on him, but still.
The inability to sit. I went months without being able to listen to a sermon in church. I was too busy pulling Martin out from under the row in front of us, or chasing him down the aisle, or retrieving him from whoever’s personal space he’d invaded. Last Sunday I heard every word of the sermon, relaxing with my arm around the shoulders of Martin, who was flipping the pages of a book.
Injuring himself. For a time bruises appeared on Martin so constantly that I stopped trying to track their sources. He banged into furniture, fell because he wasn’t watching his step, shook his head so fiercely that he smacked it into walls, tipped chairs over while attempting to arch his back enough to see behind him. Today, if there’s a bruise, there’s an identifiable cause.
Adrian says sometimes that a day will come when this whole chapter will be a distant memory.
I’m working on sharing that dream.
Twenty years from now Martin will be playing U.S. Open tennis, or making his debut at the Met, or accepting a Rhodes Scholarship, and I’ll smack my own forehead and recall, Oh yeah! Autism!
Martin’s dietary needs are leading me to a new relationship with food.
That’s a whopper (excuse the pun?) of a cliché, right?—a “new relationship with food.” Sorry. I’m not coming up with a better way to phrase this phenomenon.
I’m not an unhealthy eater. I wasn’t an unhealthy eater before this chapter, and I’m not now. I’m vegan. I watch my fats and proteins and vitamins. I love to cook and have always done plenty of it, whenever my schedule permits.
Yet until we undertook biomedical intervention and radicalized Martin’s diet, I put relatively little thought into additives, colors, and processed food versus natural. For example, I prefer to make hummus at home, because I can control the amount of tahini (just a dollop) that I add as opposed to lemon juice (plenty) and garlic (vampires refuse even to enter my neighborhood). But from a nutrition perspective, I gave little weight to the difference between (1) blender-whirring raw materials into hummus and (2) buying hummus preserved with potassium sorbate. (Wikipedia: “Potassium sorbate is the potassium salt of sorbic acid, chemical formula C6H7KO2. Its primary use is as a food preservative (E number 202).”) Nor did I consider the benefits of fresh-squeezed lemon juice over made-from-concentrate lemon juice purchased in a green-tinted plastic bottle that also contains sodium benzoate, sodium metabisulfite, and sodium sulfite.
Martin’s diet, along with its other restrictions, excludes additives and preservatives—or as I like to call them, non-food items in food. That means just about any processed food is off-limits. Even when it comes to meat: The meat we purchase must come from animals who ate unprocessed (minimally processed, at most) grains grown without pesticides.
The fact that Martin, who is so sensitive, has responded so well to the removal of non-food items from his diet got me questioning whether fresher and more natural foods would not benefit the whole family. Neither Adrian nor I suffer neurological impairment or, to my knowledge, complications with digestion or nutrient absorption. Therefore, we probably would not experience dramatic changes like Martin’s. On the other hand, what if reducing our intake of non-food items makes us sleep (a little) better, and feel (a little) more energetic, and concentrate (a little) steadier, and possess (a little) sunnier outlook? Might we not end up (a lot) healthier?
Now that I’m no longer employed, I’ve been implementing this like crazy. No more casual eating on the run. On weekday mornings, Adrian and Martin get up at 7:00 a.m. and leave home together at 8:05 a.m. to meet the school bus, after which Adrian heads to work. I, on the other hand, rise at 5:45 a.m. I cook the boys’ breakfasts; organize Martin’s supplements; prepare Martin’s lunch, beverage, and school bag; and also assemble lunch, one protein snack, and two fiber snacks for Adrian to carry to the office. (If the 5:45 a.m. thing is killing me, then at 8:06 a.m. I hop back into bed for an hour.) During the week, no food enters my guys that I have not made myself, except for Martin’s snacks and crackers baked by my mother.
My new standard for the grocery store is the “jar in my kitchen” rule. Mostly I buy fresh vegetables and bulk dried beans, i.e., unpackaged raw ingredients. (No meat or eggs at the grocery store; those I find at the farms or farmers’ markets.) As to anything I want that comes in a package, I search the label for ingredients I could not imagine keeping in a jar in my kitchen. The more ingredients I would not keep in a jar in my kitchen, the less willing I am to purchase. For example, this week I picked up the following packaged items:
• Shim’on Ariche harissa. Ingredients: hot red peppers, garlic, water, salt. Unfortunately not organic. Still, all kitchen-jar approved.
• Imagine creamy tomato soup. Ingredients: filtered water, organic tomatoes, organic onions, organic rice syrup, organic celery, sea salt, organic expeller pressed canola oil and/or safflower oil and/or sunflower oil, organic spices, organic garlic powder. The reference to unspecified spices gives me some pause. Homemade tomato soup would be preferable, but alas, a day has only so many hours for the kitchen. Overall, the Imagine soup is kitchen-jar approved
• Orgran toasted buckwheat crispibread. Ingredients: buckwheat, rice, salt. Easy call.
• NaSoya Nayonaise (vegan mayonnaise). Ingredients: soymilk, soybean and/or sunflour oil, cane syrup, vinegar, salt, mustard, apple cider vinegar, lemon juice, guar gum, xanthan gum, and sodium alginate. Caution! I was okay with everything until guar gum, xanthan gum, and sodium alginate. Not kitchen-jar approved. But in the end, I did buy the Nayonaise. I wanted it for a creamy salad, i.e., as a minor ingredient in a dish headlined by red bell pepper, pear, apple, daikon, onion, carrot, celery, and turnip. Not perfect, but some allowances must be made for tastiness.
My kitchen-jar rule is made easier by some unusual ingredients in my kitchen. Rice syrup, for instance. Though it’s not approved for Martin, it makes a gentle sweetener for my grown-up baked goods. Or lecithin. Lecithin pops up in many packaged food, and as it so happens, I do keep a jar of lecithin in my kitchen. It’s Love Raw Foods sunflower lecithin, a supplement we use for Martin, from Blue Mountain Organics.
In summary, I have Martin eating 98% fresh, 100% natural, and 99% organic. For me and Adrian, probably 80% fresh, 99% natural, and 80% organic (taking into account our weekend tendency to eat at restaurants).
There’s still the issue of our four cats. Currently, they eat Nature’s Variety canned food and dry food. I wish I could do better for them. When I was in graduate school, and had grad-student amounts of time on my hands, I made cat food at home. William the cat, who has long since died, was particularly fond of a garbanzo-based concoction I used to make with Harbingers of a New Age supplements.
Maybe someday I’ll manage a triumphant return to homemade cat food. Maybe when Martin is recovered.
Until then, alas, I repeat: A day has only so many hours for the kitchen.
George the cat, Martin’s best friend. Actually, the only of our four cats who tolerates Martin.
I’m middle-of-the-night posting again, via iPad from a chair in Martin’s room. He’s been up for three hours, since 1:00 a.m. I just fed him hazelnut butter on three-seed crackers (my mother makes these with her sunflour blend), in case he’s hungry, and also had him swallow a charcoal tablet, because he’s goofy and demonstrating detox symptoms.
Past middle-of-the-night posting events have sometimes reeked of aggravation and exhaustion. Not so much tonight. Sure I’m unhappy that I accomplished only 90 minutes’ sleep before Martin busted into our bedroom. Nevertheless, this marks the first bad night we’ve experienced since January 15, and only the second bad night since before the holidays. Because I’m not working anymore, I can deliver Martin to school whenever he wakes and has breakfast, then nap until I need to pick him up.
And there are two more mitigating factors. First, I think I can point to a cause of Martin’s nocturnal festivities: We just finished week two of a six-week herbal protocol designed to drive pathogens from his body, and it’s clearly working. His legs have a rash from secreting what his body does not need, and he is making daily progress in overcoming his ASD symptoms. Second—did I just mention this? —he’s doing really well. He is socializing regularly with his classmates and with a neighborhood friend; almost daily we get a report from his teacher detailing some new achievement; and even language (one of two great weaknesses remaining for Martin, along with joint attention in group settings) shows tiny movements in the right direction.
So instead of describing my aggravation or exhaustion (fascinating topics), I will middle-of-the-the-night post about our latest miracle.
Two nights ago, while Martin was eating dinner, I snuck up behind him and tapped his right shoulder.
Martin, in response, turned to look at me.
Ten minutes later, I tried the same exercise again. And Martin turned to look at me again.
Doesn’t sound monumental? Well, he’s never done it before. I suppose he just didn’t have the body awareness, or the consciousness of others and his surroundings, to sense a shoulder tap and realize that it had meaning. Now, apparently, he does.
I tapped his shoulder again at breakfast yesterday morning. No response. But at dinner tonight, I shifted from right shoulder to left and back again, tap-tap-tapping, and each time Martin craned his little neck to investigate. Good enough for me. Right now I don’t require absolute consistency, just evidence that Martin does possess the ability to engage in these neurotypical behaviors.
At Yale University, I’ve heard, undergraduates are invited to join exclusive secret societies via a “tap.” The chosen few are “tapped.”
I’m uncertain whether that means a literal tap on the shoulder. In any case, the events of these past couple days have made me confident that—should Martin choose to attend Yale, and then be selected for secret-society membership—he’ll be ready to respond to that tap.
Finding My Kid 