Tag Archives: anat baniel

Hot Summer in the… in the… Suburbs

Posted on by findingmykid
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Autumn temperatures have descended upon New York. Finally. Summertime is better now that we live outside the City, but even so, I’m no fan. I don’t like heat. I don’t like air conditioning. I don’t like feeling pressure to fill long evenings. I don’t like the months without the New York Rangers, although the near back-to-back scheduling of the French Open and Wimbledon, followed later by the U.S. Open, eases my Rangers-related anxiety.

Let’s celebrate the opening of hockey season with a look back at what Adrian is calling the “summer of changes”:

  • At the beginning of summer, Martin liked to spend time in our pool but refused to jump in, put his head under water, or do any actual swimming. He insisted on wearing a full life vest, and he panicked if approached, because he feared someone might try to dunk him.

During an August visit to Texas, he spent hours lounging in my parents’ pool with Grandpa. I’m not sure exactly what changed, but one day Martin and Grandpa were dipping their heads under water together. Soon thereafter, Martin was going under water alone (and, in Martin fashion, demanding applause when he surfaced). He was also, with Grandpa’s help, pushing off the poolside and making rudimentary attempts at swimming.

Back home, Martin’s cousin Mandy, who can already turn somersaults and do handstands under water, came to stay with us for a few days. Martin hates to be outdone by Mandy. He started going deeper under water, sometimes headfirst, and kicking his way back to the surface. After Mandy left, we had a visit from a 10-year-old family friend who is afraid to jump in the water. Martin seized the chance to outdo an older child and made his first voluntary, if hesitant, leap into our pool. The very same afternoon, Martin was allowing Adrian to toss him—“one, two, three!”—from the deck into the pool, plunging under water, swimming five or six feet before surfacing, and immediately demanding, “Do it again, Daddy! Throw me in the pool again!”

  • The theme of Martin not wanting his head under water has been constant for years, since before we knew he had autism. When he was a baby, Martin and I took a “Mommy & Me” swim class. The exercises included tipping baby backwards until he was floating on his back and, with the instructor’s help, having baby dog paddle a short distance to his mommy. The tipping exercise terrified baby Martin; as soon as the back of his head touched the water’s surface, he would scream. (“Don’t worry,” said the instructor. “Some kids just take longer to enjoy the sensation.”) The dog paddling never worked, either; Martin panicked when released into the water and flailed instead of making the paddling motions.

Later, through HANDLE therapy and Anat Baniel Method, I learned about Martin’s primitive reflexes and why they might not have developed properly. Those infantile pool shortcomings were warning signs.

Until this summer, Martin retained the fear of lying on his back in water, including in the bathtub, where he would insist on sitting up or, at most, lying on his side with his head propped on a crooked elbow. Not long after he started swimming under water, I found him lying on his back in the bathtub, his head submerged up to his ears. “What are you doing there, Martin?” I asked. He lifted his ears out of the water and responded, “Oh, I’m just relaxing, Mommy.”

  • Of course, a kid who doesn’t like his head under water doesn’t like to shower. We have a full-spectrum infrared sauna at home. A key part of the sauna routine is showering upon exiting, to prevent the skin from reabsorbing toxins that may have been excreted through sweat. Until this summer, the shower was such a chore that I dreaded using the sauna with Martin. As Martin’s pool confidence increased, Adrian started dragging him into the shower after swimming (which I didn’t love, because I prefer to give Martin an Epsom-salt-and-baking-soda bath to detox after swimming, but sometimes you have to let father and son have their time). Showering got easier and easier, and correspondingly so did using the sauna. It’s a kind of trade-off: fewer detox baths for more sauna time.
  • Early in the springtime, we bought Martin a new bicycle. He’d grown so much over the winter that his old bicycle, which had training wheels, looked like a circus toy underneath him. We decided to be bold and optimistic with the new bicycle and not pay to have training wheels installed. For a few months it seemed like maybe we’d been too bold and optimistic. Adrian and I made almost no progress trying to teach Martin to ride. It was frustrating. By mid-July, we were ready to throw in the towel.

Martin participates in a terrific sports-and-training program for special-needs kids, which focuses on playground skills like shooting baskets and playing kickball. When I found out that that the head trainer was also running a bicycle-riding clinic, I signed Martin up immediately. The professionals possess magic skills that Adrian and I lack; within the first hour-long lesson, they had Martin up and riding. It took a few more lessons before Martin could push himself off and pedal together, or stop without tipping over the bicycle, and it took practice with Adrian before he could successfully use the hand brake to slow himself down instead of stopping suddenly. As of today, Martin still can’t stand up and pedal, as to power himself uphill. But that will come. Meanwhile, he rides four- and even six-mile journeys with Adrian.

Monday evening, as we pulled in the garage, late for dinner, with homework yet to be done, Martin said, “I’m just going to do some bicycling riding now.” I couldn’t allow that. But it was nice that he wanted to.

  • Shoe tying. This is another area where Martin didn’t want to be outdone by Cousin Mandy, and where we sought professional assistance. Cousin Mandy can tie her shoes already. During a car trip together in August, she decided to try teaching Martin. That didn’t go well. Eventually tears were involved. Nonetheless, it put the idea in Martin’s head, and after Mandy was gone, he asked me to help him learn. I tried. I failed. (It’s a good thing I don’t homeschool. One day Martin will agree.) The first week of school, I wrote a note to Martin’s occupational therapist listing shoe tying as one of our goals for the year. You guessed it: Within a week, the OT had him tying his shoes. Within two weeks, he’d mastered the double knot. Now Martin is concerned with learning to tighten laces sequentially and also tie “big laces,” because he wants to be able to—lace up his hockey skates.
  • That’s right. Martin is learning to play ice hockey. We had planned to try him this fall in a Mites league, or even down one age group on a Mini-Mites team. But he had no skating experience, and many of the kids on those teams have already been skating since age two or three, and suiting up for hockey for at least a full season, if not two. Adrian and I weren’t even sure whether Martin would like playing hockey. We didn’t want to frustrate him on the ice with kids much, much more skilled than he is. So instead we signed him up for private lessons. He loves the skating so much that now he wants to take an extra lesson each week, in order to reach stick-handling skills sooner.

I doubt that Martin is destined for hockey greatness. I was satisfactorily athletic as a child, competing in swimming, soccer, softball. Adrian, by his own reporting, was an utter flop at everything except skiing. We are hardly the type of world-class athletes that tend to produce other world-class athletes, and Martin is getting a later start, both in age and skill development, than most players.

Nevertheless, please take a minute to contemplate what it means to me to see my son on skates. If you read this blog, you know I love hockey. When Martin, my only child, was diagnosed at age two with mild-to-moderate autism, my dreams of raising a hockey player flickered, and maybe fizzled. Five years later, with the help of biomed and therapies, Martin is tying skates, wearing hockey gear, and getting ready to start learning stick-handling skills. Yes, he is.

Having a summer of changes is a beautiful thing, because “change” is not usually a development that sits well with a child on the spectrum.

And now, the summer of changes has drawn closed. Halloween is nearly upon us. Martin wants to be Donald Duck this year, which is a real problem; the duckier costumes are made for infants, small children, and (not sure what this is about) adults. Apparently no one between age five and age 18 is supposed to be Donald Duck. For my tall seven-year-old, I’ve had to resort to a “pajama costume.”

Maybe next year we’ll have the “autumn of more-grown-up costume ideas.”

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All Dressed Up

Posted on by findingmykid
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“Martin, why don’t you go get yourself dressed like a big boy? Want to pick out your own clothes and get dressed?” I asked at nine o’clock yesterday morning. We had all slept late, and Martin was running around the house in jungle-print pajamas.

I didn’t believe that he’d actually get himself dressed. Six months ago, I laid pajamas out on his bed and spent 20 minutes trying to get him to take off his clothes and put on the pajamas. I went away to let him concentrate, returned every two minutes to beg or threaten or cajole, even lost patience (not my finest parenting). Martin continually forgot his task. He rambled about nothing, jumped on the bed, played with Curious George. I absolutely could not get him to focus enough even to remove his clothes.

Not too much has changed since then, except that for the last two weeks Martin has responded to every suggestion, however benign, with a resolute “No!”

Nevertheless, this morning I mentioned getting dressed only once before Martin said, “Okay!” and scampered down the hall to his room.

I went to the kitchen, where Adrian was eating breakfast. “I told him to get dressed,” I said. “I’m not hopeful.”

Barely a minute had passed before I heard Martin running down the hall from the bedrooms, yelling, “Mommy! Mommmmm-meeee!”

I found him standing in the living room, buck naked except for the blue socks he’d worn to bed. He looked straight at me (score!) and asked, “Mommy, am I still five years old?”

“Yes, you’re still five years old. Now don’t forget to change your socks.”

Martin ran back to his bedroom.

I returned to the kitchen. From afar, I heard a familiar sound. Martin’s bedroom dresser has thick metal handles attached to the drawers with leather loops, and when the handles are dropped, they clunk against the wood. The dresser is the last piece of a heavy German bedroom set that my older brothers once shared. As a kid, from my bed at night, I would hear that clunk and know Rudy and Eddie were getting ready to sleep. Now the sound ties Martin to his uncles.

“He opened the dresser,” I reported to Adrian. “I think he’s getting out clothes.”

After another minute Martin came running down the hall again. I met him in the living room. He was wearing clothes.

“You got dressed!” I exclaimed. “You got dressed! Good work! Go show your daddy!”

Martin went to the kitchen through the family room. I went through the dining room and got there first, which gave me a second to throw my fists in the air, jump up and down, and whisper to Adrian, “First time. First time dressed by himself without a reminder.”

Martin arrived. As Adrian picked him up for a hug, I surveyed Martin’s choices. Navy blue sweatpants with CHICAGO printed on one leg. A white sweatshirt with blue stripes. Adrian set Martin down, then snapped the sweatpants waistband to make a confirmation. “You’ve got underwear,” he said.

“Oh dear,” I added. “Martin, you’re doing so well. But you did forget to change the socks. Go change your socks?”

Back down the hall went Martin.

“Am I pushing my luck?” I asked Adrian.

Moments later Martin sauntered back into the kitchen and said, “Actually,”—that’s a favored word right now, the snarky actually—“I’ve decided to wear my sandals today.”

On his feet were Velcro beach sandals, without socks.

It was 34 degrees out.

“Sure, Martin,” I said, content. “Why don’t you wear those sandals until it’s time for church, and then you can put socks and shoes on at the same time.”

I was happy. Adrian was happy. Martin was happy.

Autism, of course, has its ways of changing any day. At church, after the service but still in the sanctuary, I told Martin that he had enough time to run around in the gymnasium but would have to eat his snack in the car. (We had to get to an Anat Baniel Method therapy appointment.) Martin responded by screaming, repeatedly, interrupting the postlude and eliciting annoyance from fellow parishioners. I picked him up and carried him outside. A complete meltdown ensued.

Last night Adrian tucked Martin into bed at 8:00 pm. Martin, who has recently discovered the joy of exiting his bed and running to the living room, went to sleep at 10:45 pm. Unlike Adrian, I cannot fall asleep while Martin is up and chatting. I got to bed after 11:00 pm and was one unhappy camper when 5:00 am rolled around.

Fortunately, as I may have mentioned, yesterday Martin dressed himself without prompts.

Which reinforces this truth: With every new morning comes fresh hope.

Martin plays this weekend in Bedford-Stuyvesent, Brooklyn. I told him he was too big for these baby swings. He responded by putting his "little brother Curious George" in for a ride.

Martin plays this weekend in Bedford-Stuyvesant, Brooklyn. I told him he was too big for these baby swings. He responded by putting his “little brother Curious George” in for a ride.

Idioms All His Own

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

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

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

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

“No writing?”

“No.”

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

“No.”

“No pencing?”

“Nope, no using a pencil.”

“No craying?”

“Nope, no using a crayon, either.”

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

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

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

“Okay.”

He keeps playing with the phone.

“Hey, get out of the bedroom.”

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

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

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

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

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

Why, Hello Again

Posted on by findingmykid
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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.

Holy Cow, What a Week

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This has been a week of outrageous swings: new development upon new development, meltdown upon meltdown.

Let me start with the good. Let me start with the incredible, because I am bursting with pride. Here, blog world, are the headlines—

Martin has managed new feats of attention. Sunday I asked Martin to put on his shoes. Martin walked to the front hall and put on his shoes, albeit on the wrong feet. That was an achievement in itself; seldom does Martin obey a command without additional prompting, especially not a command that requires multiple steps to fulfill. (Walk to front hall. Find shoes. Sit down. Put on first shoe. Velcro first shoe. Put on second shoe. Velcro second shoe. Usually I ask two or three times, and finally bark, “Martin! Shoes! Feet! Now!”) After the initial success Sunday, I said, “Oh, Martin, I think those shoes are on the wrong feet. Why don’t you switch them?”, and he did it without being asked twice. He looked at his feet, removed the shoes one at a time, reversed them, and Velcroed them closed again. He didn’t seem to notice that tears of happiness appeared in my eyes.

Martin is showing off. Tuesday on this blog I described how Martin jumped in circles on a trampoline at the doctor’s office and announced, “I’m jumping in circles.” It was a generalized observation, kind of informing the universe what was happening. Compare what happened the next day, Wednesday, at a Manhattan playground: After three tries, Martin managed to ascend a green spinning corkscrew and hoist himself onto a V-shaped joint at its top. Then, balancing himself, he checked to see if he had my attention and said, “Look how high I am!” That was no generalized news bulletin. That was a desire to show off to his mommy. He was proud of himself for climbing the corkscrew, and I was proud of him for wanting me to know it.

Martin is moving, at least sometimes. We live in a fourth-floor walk-up apartment. Because the apartments below us have high ceilings, it’s more like climbing five flights. There are 78 steps total. I know because I used to count them when I was eight- and nine-months pregnant. I thought getting up the stairs was tough in those days. It was nothing compared to the challenge of getting Martin up them. He dawdles. He fiddles with his bicycle, stored in the ground-floor foyer. (We have the kind of cool neighbors who allow that.) Especially when he’s lethargic, he sits down on the landings and talks to himself instead of continuing. If I take his hand and try to march him upwards, he bends his legs slack and suspends his body from my hand. The stair process can last ten, fifteen minutes. So imagine my surprise Wednesday evening when, as we entered the building, Martin said, “I want to hold your hand,” then took my hand in his and, next to me, ascended all 78 steps without interruption—a historic achievement in Martindom.

Martin wants what other kids have. Yesterday morning, Friday, I brought Martin to an Anat Baniel Method therapy appointment. As we were leaving, we encountered another boy, about Martin’s age, and his father. The boy made excellent eye contact and had far more verbal skills than Martin. He introduced himself by name. Then, obviously proud, he held up an MTA MetroCard and said, “My dad gave me this to hold, and it still has some money left on it.” Martin, who watched and heard this from a few feet away, immediately said, “I want to hold a card. I want to hold a card!” Unfortunately, I had just loaded $50.00 onto my MetroCard and therefore did not want to trust it in Martin’s hands. I said, “Let’s go back to the subway station and see if we can get you one.” I hoped that, in the ten-minute walk to the station, he might forget the incident. Instead, when I pulled out the MetroCard to enter the station, he demanded to hold it, which I allowed for a short time. Martin has taken an interest in other kids’ food before, but to my recollection he has not sought their playthings or special privileges, at least not so earnestly.

Martin is indicating the person to whom he’s speaking. This began when he started using the command form; to his dictates, he appended Mommy. “Come here, Mommy.” “Open the candy bar, Mommy!” (Martin doesn’t really eat candy bars, of course. We call Go Raw brand raw sprouted seed bars “candy bars” to make them sound as delicious as possible.) Within a few days, as we were driving in the car, Daddy became subject to our little dictator, too. “Close the roof, Daddy.” “Turn on the radio, Daddy.” Not too much later, we realized that even non-command comments were directed toward me or Adrian. “Mommy, I want something to eat.” “Daddy, I need some help.” Martin was no longer throwing words to the wind. He was giving them to his parents. Finally, just yesterday afternoon, I heard him specifically address someone other than me or Adrian. “No, Samara,” he responded to a question from his babysitter. Martin begins to understand that a conversation requires a partner.

Martin doesn’t always need the sound. Last night Samara was giving Martin a bath while I packed for our Thanksgiving trip to Texas. (I’m typing this entry on the airplane, while Martin watches Sesame Street on the iPad. We’ll be in Texas for a week.) From the bedroom, about ten feet away, I caught Martin’s eye. I put my hands over my heart and silently mouthed the words, “I love you.” Martin apparently read my lips. From the bathroom he called, “I love you, Mommy.” Can you imagine? A boy who once lacked appreciable receptive language read my lips.

So we had a week of singular advancements. Let me not, however, overstate where we are. As always, there’s more to the story.

•      On Sunday while Martin switched the shoes from foot to foot, although he maintained focus on the task, he also perseverated nonsense to no one while he worked. “I’m reading it on the computer. ¡Hola! The elephant’s name is Mitt. I’m not going to take a shower!”

•      The day Martin climbed the corkscrew, there were some four dozen kids scampering around the playground, chasing each other and playing games. Martin declined to interact with any of them. The activities to which he set his mind were his, and his alone.

•      After Martin seamlessly ascended 78 steps while holding my hand, he entered the apartment, removed his shoes and coat, and immediately began self-stimming, running back and forth with two pa-dap-BUMPs capping each lap.

•      While the boy with the MetroCard introduced himself, Martin turned around and thrust his face into a waiting-room sofa, with his butt in the air towards me, the boy, and the boy’s father. When I fished him from the sofa and asked him to say hello, Martin responded by muttering, “No, no!” and hiding behind my legs. It was from that position that he watched the other boy show off his metro card.

Moreover, Martin’s mood has been disastrous. Perhaps because of the itchy viral rash plaguing him, or perhaps because our travel has thrown off his sleep, or perhaps just as a counterpart to the rate of change in his neuro-processing, Martin has turned on the tears at any provocation this week, and sometimes at no provocation.

One sunny morning he said, “It’s cloudy outside.” When I said, “Look out the window, Martin. I think it’s sunny today,” Martin started crying and yelled repeatedly, “No, it’s cloudy outside. It’s cloudy outside.” For several minutes he was inconsolable. Another morning, following a poor night’s sleep, Martin whined continuously for 30 minutes. Oh mommy oh mommy oh mommy oh mommy oh mommy oh mommy on and on. And on and on. And on and on. His poor night’s sleep meant I was running on about three hours’ sleep that morning. The oh mommys did nothing good for my nerves.

This afternoon Adrian suggested that Martin consider wearing his green fleece coat to Texas instead of his bulky winter jacket. Martin responded by screaming from our apartment, screaming down 78 steps, screaming through the foyer and parking lot, and screaming halfway to JFK. I occupied the passenger seat and rubbed the back of Adrian’s neck as he drove. We pretended that no one was screaming in the back seat.

When the noise finally stopped, I said to Adrian, “It’s amazing, isn’t it, all the new things he’s managed this week?”

Wondering Where Recovery Lies

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Martin and I are at LaGuardia, on a flight delay. Fog. We’ve survived a hurricane ripping through New York and an unseasonable Nor’Easter dumping snow onto our neighbors’ powerless, unheated homes. Here at LaGuardia, however, it’s “patchy fog” that ruins the day.

I just spoke with the staff at Martin’s doctor’s office. That’s where we’re trying to fly—to his doctor’s office. We’re lucky; they’re going to rearrange some scheduling to accommodate our 90-minute delay. Let us hope it’s 90 minutes only.

I want to make it to the appointment, because medically speaking, Martin is not doing well. (Again.) Since our last appointment, eight weeks ago, he evened out, then looked good, then slipped. For the last three weeks he’s been plagued by a yeast imbalance. (Again.) Since beginning biomedical intervention almost two years ago, we’ve got yeast under control three times, only to have it strike back three times. Right now Martin’s skin is leathery and covered with scratches. He itches. He can’t resist clawing at his arms and legs. And with yeast come symptoms: distraction, irritability, toe-walking, skipping. I dread the pa-dap-BUMP sound that means Martin has lost attention, jumped into the air, and is about to start running laps. I hear pa-dap-BUMP a dozen times a day.

Still, outside the biomedical realm, Martin is making some progress. Last month he began Anat Baniel Method (ABM) therapy. Within a week we saw verbal progress: He started using the command form. He said, “Mommy, come play with me,” at the playground. I thought that might be a fluke, until he called, “Mommy, come here,” from the bathroom and then said, “Turn it off please,” when I ran the Vitamix during breakfast. Previously Martin could not use the command form; he either used an affirmation (“You’re going to come here”) or expressed a desire (“I want you to come here”). I was on cloud nine with the new verbal ability, until Martin barked, “Make me a snack!”

We’ve made some RDI progress, too. We’ve been working on pacing and facial referencing. Two days ago Martin asked for his drumsticks. I said, “I think I saw them on the chair.” Martin walked to a chair in our living room, didn’t see the drumsticks, then turned back to me, looking for more information. (Ding! Ding! Ding! RDI success!) I said, “No, one of those chairs,” and thrust my chin toward the sitting room. Martin got the idea but missed the exact location; instead of the sitting room, he headed for the dining table. (Our loft has an open floor plan. These areas all sort of merge.) Then he turned back to me again. (Ka-BOOM!) I said, “The chair over there with the doll on it,” and there he headed, to find his drumsticks.

So it’s a mixed bag, these days. Since we started biomedical intervention, I’ve lived with the assumption that the key to Martin’s recovery lies in healing the immune issues that underlie the disorder. These days, when the biomedical aspects are getting us nowhere—unless “Symptomatic Itchy-ville” counts as a place—but behavioral and physical therapies are showing some results, I question my assumption.

I’ll post again after today’s medical appointment.

If we make it.

Stuck at LaGuardia. Not much to do.