It Used to Be Fear

Posted on September 16, 2015 by findingmykid

Over Labor Day weekend we visited Dr. Zelinsky, near Chicago. It was an easy day trip. Martin and I caught a 10:30 a.m. flight from LaGuardia to O’Hare. My friend Chris picked us up at O’Hare, we had a delicious brunch at Prairie Grass Café, Chris worked nearby while Martin and I were in Dr. Zelinsky’s office, and then we stopped at a playground on our way back to O’Hare.

Dr. Zelinsky had many perceptive observations about Martin’s development and brain functioning; she always does. Enough said. This post isn’t about Dr. Zelinsky. It’s about the playground.

The playground was random, selected by me and Chris from Google Maps as we drove. It turned out to be lovely, tucked in a wooded suburban acre. While Chris looked for the parking area, Martin and I walked a path to the swings and slides. He asked whether other kids would be at the playground.

“I don’t know,” I replied. “Maybe.”

Martin has long avoided kids he doesn’t know, especially in contexts like the playground, which can be overwhelming. Playground kids clump and run together, and Martin can’t keep up. I assumed he was worried and wanted the playground to himself.

One girl, it turned out, was there, sitting on a swing.

Martin investigated some climbing equipment. After just a moment, he walked over and sat on the swing next to the girl.

“Hi there,” he said. “I’m Martin and I’m seven years old. How old are you?”

The girl was seven too. She asked Martin where he goes to school. He responded—she didn’t recognize the name, of course, since we were in Chicago and Martin goes to school in New York—and then he asked where she goes to school.

That’s right. A reciprocal question.

“The Ryan School,” the girl answered. Or something like that. It was hard to hear her.

“Where?” Martin asked, then, when she repeated and he still didn’t get it, “Where?”

The girl’s dad, who was seated on a bench near the swings, turned to me and said, “She’s got a bit of a lisp that makes her hard to understand. We’re working on it.”

It’s not you kid. It’s mine. First time anyone’s said that to me.

“He’s not going to know the school anyway,” I said. “We’re just visiting from New York.”

We shared a laugh. The kids said a few more kid things, and then some sort of who-can-swing-higher competition ensued. Or at least Martin treated it as a competition.

Around that point, I realized something: Martin hadn’t asked whether any kids would be at the playground because he wanted to avoid them. He’d asked because he wanted to play with them.

The realization was confirmed the following week, when I took Martin to an indoor playscape near our home and he said, “I’m going to look for some kids to make my friends.”

The girl in Chicago eventually lost interest in Martin, and he didn’t succeed in finding any kids to make his friend at the playscape.

Nevertheless, he was seeking kids out, instead of avoiding them. That’s progress.

Progress.

Martin at the playscape, looking for friends.

Okay, this wasn’t taken at any location described in this post. But I couldn’t resist! It’s Martin and a buddy at an amusement park.

Those Doubts Are Gone. From a Mainstream Perspective, I Get Crazier by the Day

Posted on June 26, 2015 by findingmykid

Remember my doubts about Heilkunst homeopathy?

Heilkunst is about supporting the body’s natural healing power, allowing its own return to health. I had to go through the dreadful process of enumerating, in reverse chronological order, the many insults to Martin’s immune system, from medications and illnesses to vaccines to home remodeling while I was pregnant. For eight months we’ve done a “clear” every two or three weeks, working backward through what might be hampering Martin’s recovery.

Immediately after we began the first clear, which addressed coxsackie, Martin vomited and woke the next morning with a mild coxsackie-like rash on his hands. Since then we’ve seen what appear to be “healing reactions” of all sorts. Itchy neck. Inner-ear swelling. Tired allergy eyes. More vomiting. ROOS. Ugh, ROOS.

At the same time, Martin has been getting better and better. Seriously, he’s having a homerun 2015. I’ve been “reasonably convinced” the Heilkunst is doing what it’s supposed to.

Time to scratch the “reasonably.”

Our last three clears have been MMR, the H1N1 vaccine, and antibiotics we used when addressing SIBO. The antibiotics actually should have been addressed much earlier, in terms of chronological order; I realized only recently, from reading comments in an on-line group, that antibiotics need to be cleared.

I had a hunch that H1N1 clear would be a tough one. The H1N1 vaccine—why on earth did I fall prey to the unnecessary frenzy over that illness?—was the only injection from which I saw a noticeable difference in Martin, beyond the fever-crying-and-blues we are supposed to accept in a recently vaccinated child. He received the H1N1 shot in November 2009, when he was almost 17 months old. (According to his medical records, a “second” H1N1 shot was administered in January 2010. I have no recollection of that.) The shot was not a bad one, in terms of Martin crying or acting out. Instead, he became very quiet and withdrawn, and then, the same afternoon, I noticed him engaging in repetitive behaviors: moving toddler chairs into formation, stacking them, moving them. It was the first time I’d ever noticed such behaviors. Do I know that the onset of repetitive behaviors was tied to the H1N1 vaccine, instead of coincidental? No. But the timing raises red flags. Plants a whole row of red flags.

So I went into Martin’s Heilkunst H1N1 clear with trepidation. The clear involves three wafers given over three days, and then a two-or-three-week waiting period while Martin’s system works through the effects of the H1N1 shot.

As to what happened, here is the update I sent to Martin’s Heilkunst practitioner following the H1N1 and MMR clears:

With the H1N1, Martin was crabby for more than a week. He also had trouble sleeping and reverted to some behaviors we haven’t seen in a long time, such as uncontrollable perseveration and also verbal stimming (he says “goo-HEN-duh-may” repeatedly, and tries to get others to say it also, by asking, “What did I just say?” or, “Is ‘goo-HEN-duh-may’ a word?”). One afternoon he was super crabby and tired, and at dinner he said abruptly, “Mommy, I need to throw up.” (I feel bad: I didn’t believe him, because he frequently says that when he just doesn’t want to eat, doesn’t want to go to school, &c.) Then he vomited, twice, all over the dinner table and floor. After I got him cleaned up in a bath, he seemed to be feeling much, much better. He asked if he could have dessert even though he didn’t finish dinner, and then he went to bed and slept more peacefully. No trouble after that.

I waited another week and then did the MMR. Martin did not get as crabby, but one night after I bathed him, I noticed a bright red, raised rash on one half of his backside. By morning the rash was gone. Also, one day later he was covering his ears and saying they hurt. I put some Hyland’s earache drops in them, which seemed to help.

Overall, Martin is doing very well right now, with a big increase in conversation skills and some in attention. Socialization remains tough.

I should add that the rash I saw on Martin while we were clearing MMR was a mild measles-like rash. I know, because I had measles when I was 12. (I lived in a semi-rural area where, as far as I know, vaccination rates were near 100%. I caught measles despite being initially vaccinated, and later hit with a booster shot. I’m resisting the urge to make this post about vaccines.) In regard to looking like measles, Martin’s rash was clear and distinct.

Let’s agree on this: I don’t have my doubts about Heilkunst anymore. These wafers are doing something.

Let’s follow up with this: I don’t know how Heilkunst is working, or exactly what these wafers are up to. I know that the principle is “energy medicine.” Each wafer delivers a minimized, harmless form of what insulted the immune system, to help the body recognize and expel the toxin. But how does the wafer acquire that energy? At AutismOne, out of lingering curiosity, I crashed the Homeopathy Center of Houston panel discussion and asked questions. We don’t use the Homeopathy Center of Houston, buy hey, same idea as Heilkunst, right? Or close? The lovely ladies of Houston explained about dilution and formulas and administration and many other procedures, and my little brain left the room as uncertain as ever. I may be violating my own policy of comprehending any treatment before we begin; in the case of homeopathy, I consulted as many parents as I could find and also searched online for reports of negative or adverse reactions to sequential homeopathy. Having found nothing substantial or substantiated, I proceeded.

My online searches did yield studies (and straight-up arguments) concluding that homeopathy in general is bunk, just so much ineffective snake oil peddled at high prices. I took those accusations under advisement.

And now I feel comfortable saying: They’re wrong.

If Only I Had Decent Answers

Posted on June 11, 2015 by findingmykid

Is Martin curious?

When Martin was a toddler, when his autism had emerged but Adrian and I did not yet recognize it, I thought he was curious about mechanics. He spent hours staring at mechanical devices. I don’t mean that as hyperbole; unless someone intervened, Martin would stare without stopping, for however long we left him. If I wanted to make dinner, I could push the upright vacuum into the middle of the living room and count on Martin to remain, indefinitely, within 36 inches of the appliance, circling to see from different angles, lying down with his head by the wheels. On the street, the only time I could be confident that he wouldn’t bolt was when we had an excavator or backhoe or other piece of heavy equipment to look at. Then he would stare. Stare. Stare.

You ask, How did we not recognize autism? I answer, First-time parents. Give us a break.

After we started autism recovery, Martin stopped gazing at mechanics, and his echolalia (which had been his lone form of spoken language) eased into perseveration. At that time, I probably would not have called Martin curious. His mind got into ruts, and he asked the same question repeatedly. He seemed uninterested in what was new. How could a boy who stuck to one topic, for weeks, be called curious?

Still, we were grateful for what we’d got. At least he put together the sentences, and later questions, on which he perseverated. That’s a step up from echolalia.

Martin still perseverates today, though less. He cycles through topics of interest. We’ve spent the last couple months on street signs. He wants to know everything about street signs. Why does the sign for “playground ahead” have only a see-saw on it? What is a shoulder? Why can’t you drive on it? Mommy, slow down! There’s a speed zone ahead. Before street signs, Martin was into phases of the moon, and facts about the moon. Before that, musical instruments.

Despite the perseveration, Martin’s real, natural curiosity is starting to make itself known, through his ever-increasing language skills. In the last few weeks, I’ve heard questions like these:

In the car, as “Fire and Rain” comes on the radio: “Mommy, what is James Brown signing about?”

Upon finding out that I would be gone for four days to attend a conference (A1!) in Chicago: “What is the conference about?”

Looking around my home office, and realizing that I have portraits of three deceased cats on the wall, when in fact I’ve had not three but four pet cats who’ve died: “Why don’t you have a picture of Tiny Rachel on the wall?”

On a lazy weekend morning, after he climbed into bed with me and Adrian: “Mommy, why did you decide to marry Daddy?”

I’ve been ecstatic about each such question. I do, however, need to add a caveat: Sometimes Martin doesn’t really listen to the answer I give him. Sometimes he poses the question, then interrupts my answer to ask another question or introduce a new topic. When that happens, I wonder whether he’s actually being curious, or whether he’s just trying to control the situation (this happens) by having me answer his choice of question. Ah, well. It is what it is.

Hey, are you wondering why I don’t have a portrait of Tiny Rachel in my home office? Tiny Rachel was my first cat. I adopted her, all five pounds of her, just after I graduated college. She saw me through my first master’s degree, law school, a total of 13 apartments, work, cohabitation, marriage, my second graduate degree, and finally, pregnancy. Tiny Rachel was whip-smart, and full of piss and vinegar. She hated everyone but me. She died three months before Martin was born, and I think she surrendered some of her spirit to him. I’ve never really been able to admit that Tiny Rachel is gone. It’s been seven years. I need a few more before I can hang her portrait.

I See Your Napkin Hand-Off, and Raise You a Call for Pajamas

Posted on June 9, 2015 by findingmykid

Sunday morning, I lay clothes upon Martin’s bed and told him to get dressed while I showered.

Ten minutes later, after my shower, I found Martin his room, fully dressed except for socks. “Hey, what about these?” I asked.

He grabbed the socks and scampered away.

“Wait!” I called after him.

He had left his dirty pajamas on the bed. He knows that dirty clothes belong in the blue laundry basket in his bathroom. I gathered the pajamas and stepped into the hallway. Martin was 15 feet down the hall, on the floor outside his bathroom, pulling on his socks.

“You left these dirty pajamas on the bed,” I said. I wanted him to get up, walk back to me, and take the pajamas.

Instead, he kept his butt on the hardwood floor, reached his hands toward me, and danced his fingers in the air. All the while, he kept his eyes on me.

His request was obvious. The gesture was obvious. Throw them to me, he motioned. Throw me the pajamas.

Straight-up, flat-out nonverbal communication. No doubt about it.

Right away I remembered the day four years ago—before Martin could follow eye gaze or pointing, before a nick of the chin one direction or another meant anything to him—when Martin comprehended a nonverbal cue and dropped his napkin into my hand. We were a year post-diagnosis, then, and I was so pleased that he’d understood what I wanted.

Look at him now. Sitting there (literally) and motioning for me to throw him pajamas, as if it’s nothing. As if nonverbal communication is nothing at all. Sure, we may be five years into the arduous recovery, we may have our ups and downs, we may be clawing our way out of quicksand into fog, but look at him now.

I threw the pajamas at Martin. They hit him in the face. (Catching skills? Not quite there yet.) He giggled and still didn’t get off the floor. He kind of scooted and crawled into his bathroom, dragging the pajamas, and deposited them into the blue laundry basket, then returned to the task of pulling on socks.

’Atta boy.

Martin behind Adrian, on a walk near our home. Learning, I suppose, to follow.

Turn and Face the Strange

Posted on January 29, 2015 by findingmykid

Sorry for my lack of blogging these two weeks. Circumstances got in the way.

Let’s start with last week. I have two fabulous women who assist with Martin’s care. On Tuesday afternoons, Janine—four years ago, she was one of Martin’s EI providers, and she’s been with us ever since—accompanies Martin to our church’s kids’ club and facilitates his participation, then brings him home and does dinner and bedtime. I use the time to write. On game days, I take my notebook computer to a pub to watch the Rangers play. Other days, the computer and I hole up at the town diner or the pizza joint. (When we lived in the City, I wrote at a wine bar. Suburbs change everything.)

Thursdays and Fridays, Martin’s nanny Samara comes. Thursday is “my night out.” I meet a girlfriend for drinks or dinner, or I write. Friday is date night, reserved for Adrian.

Last Tuesday, Janine had a migraine, so Martin and I were on our own. On Thursday, Samara’s husband came down with the flu. She wanted to take care of her husband, and also didn’t want to share the virus, so she stayed home and Martin and I were on our own again. And when I say “on our own,” I mean it. Adrian was skiing in California. You’re welcome, Adrian.

What about the daytime? you ask. Why didn’t I blog while Martin was at school?

Well, on Monday the dishwasher went kaput. That might not sound all-encompassing, so keep this in mind—on an average day, I run the dishwasher three times, and every load is full. That’s right. Around 9:00 a.m., I run the dishwasher with the breakfast dishes, any pans leftover from the previous evening, coffee tools, cat dishes, and whatever bowls I’ve used to assemble quick snacks. Mid-afternoon I pack the appliance with the utensils I’ve used to prep dinner (1:00-3:00 are my sous-chef hours) and assemble Adrian’s lunch for the next day, my own lunchwares, more cat dishes, gym water bottles, and the et cetera that clutters my counters, like flower vases, kombucha vats, gym water bottles, juicer parts, and (every second or third day) broth pots. Before bed I load the thing again, this time with dinner cooking vessels, dinner dishes, the bowls and utensils I send to school with Martin, more cat dishes, bakeware from muffins and grain-free breads, and glass storage containers emptied from the fridge, which are many because I will not waste food given by an animal.

If that array makes your head spin, then picture me washing it all by hand. So there went last week.

And this week? A blizzard hit our area. For sure, it wasn’t half the blizzard the weather folks forewarned. But it was enough to get the schools released early on Monday, cancelled on Tuesday, and delayed on Wednesday. Let’s just say that Martin and I got to spend ample time together, which is not conducive to writing. Meanwhile, Adrian, fresh from the airport, appeared at home Sunday evening for a dinner party we threw, then departed again Monday morning (pre-“blizzard”) for the Midwest, and my good friend Coleen (you’ve met her before) was staying with me, to cater the aforementioned dinner party. Because of the weather, Coleen couldn’t go home to Upstate New York, Adrian couldn’t return from the Midwest, and Martin and I endured a continually evolving schedule.

I accomplished nothing.

Actually, Coleen and I washed a lot of dishes, by hand. Other than that, I accomplished nothing.

That’s a lot about me, right? No worries. I’m about to circle this post back to Martin.

Because guess what? Martin has had a tough couple weeks. Yeast flare, discomfort, blah blah blah. And yet—he did fine. Confronted with change upon change, he held steady. Nary a meltdown. When Janine couldn’t come, Martin had to skip the church kids’ club and run errands with me instead. He complained, like a six-year-old. He didn’t cry. We survived. When Samara couldn’t come, Martin said he was sad, and then spent too much time on his iPad. We survived.

I’m not ready, yet, to relegate meltdowns to the “so far gone” list. They still happen, or “kinda” happen. This morning, for example, Martin didn’t finish his breakfast in time to choose which dishes and utensils I would send for his school lunch. (We love incentives! If breakfast is done by 7:30 a.m., the choice is his. If he dawdles until after 7:30, I pick.) Upon learning that he had missed his deadline, Martin started to cry. I said, “I don’t think you have anything to cry about. Cut that out, and let’s get ready for school.” And then he was done.

Not long ago, if Martin said he wanted to change the radio station in the car, I had to undertake this analysis: “If I change the station, I’m giving into his rigidity, against my RDI instincts. If I don’t, he’ll have a meltdown, and I’ll have crying and distress on my hands.” Not anymore. Now I ponder something more like, “He wants a different station. How much do I like this song? Should I just change it, or should I listen to this song and let him choose the next?” That’s a world of difference.

There was a time when last week and this week would have been nightmares. We’ve come far enough that, now, they were just pains in the neck.

This morning the dishwasher was repaired. Right now, the Rangers are playing the Canadiens.

So here I sit. Writing.

Happy.

Year 2014 in Review

Posted on January 15, 2015 by findingmykid

A year ago, I woke up on New Year’s morning with the conviction that 2014 would be a banner year in Martin’s recovery.

It’s time for a look back at 2014.

Martin and a boy he played with on the beach, Florida Keys, New Year’s 2014.

We started several interventions to which, for a change, Martin plainly seemed to respond. (I write “for a change” because these were some of the few times when I was able to isolate particular interventions that helped. More often, it’s just something in “the whole package.”) When I posted in late July about five treatments that were “working now,” I also posted my frustration in jumping to conclusions based on initial positive results. I’m going to report now that at least two of those five “what’s working now” treatments, six months later, still are kicking autism’s butt: camel milk and Candex. Martin’s language took off immediately following the introduction of camel milk, and it hasn’t stopped since. Did you Tuesday’s post about the conversationalist? How cool was that? As for the Candex, Martin still has yeast flares. (I’ve come to accept that candida overgrowth may be a battle we fight for many years. Therein may lie our war.) Since we started using Candex, however, those flares have been milder and of shorter duration. They’ve been manageable.

Martin with his cousin Mandy in the snow, February 2014.

And the other three “working now” treatments, the GAPS diet, Enhansa™, and MitoSpectra? We are still on all three. I modified the GAPS diet by adding quinoa and reducing Martin’s meat consumption to one meal per day. (The reduction of meat isn’t particularly a “modification,” I suppose, though it felt that way.) I think Martin’s gut health is better than ever, though I wish he weren’t still prone to yeast flares. As to Enhansa, Martin’s chronic inflammation appears to have eased; I can’t say whether the Enhansa is responsible, or general improvement in gut health. I may stop the Enhansa, as an experiment, and see what happens. I plan to keep the MitoSpectra, for the time being. I reduced Martin’s dosage when a blood test revealed high levels of carnatine, and I feel like I could be doing more for his mitochondrial functioning (hence the quinoa). I’m keeping the MitoSpectra because I haven’t yet discovered that next best thing.

Martin at Planting Fields Arboretum State Historic Park, Oyster Bay, New York, Spring 2014.

In the second half of the year, after my “What’s Working Now” post, we started vision(-ish) therapy with Dr. Deborah Zelinsky; Heilkunst homeopathy with Rudi Verspoor; and a weekly facilitated social group with local kids. So far, I give all three a big thumbs up. We are in another period when “things are going well” but I’m not totally sure why. I may be observing a slight uptick in Martin’s eye contact and attention span. I’ll give that development to Dr. Zelinsky. Martin had a fever and apparent healing reaction over the Christmas break. That goes to the Heilkunst. As for the social group, that’s a confidence-builder. Martin is happy to have friends of his own. Last week, for the first time, he asked to bring a game that everyone could play—the lovely wildlife bingo set his uncle Eddie gave him.

Martin rock climbing at a birthday party, July 2014.

Did I make mistakes in 2014? Of course I did. I think the straight-up GAPS diet had too few carbs to meet Martin’s mitochondrial needs. I know there is debate on this point. For my child, I should have known; way back in 2011, when we first went grain-free, Martin showed signs of mild ketoacidosis, and we had to add a few gluten-free grains back in. This time around, I should have guessed that he would need more carbs than GAPS allows.

Martin with his uncle Rudy, Strasbourg, France, August 2014.

I rushed treatments. The mother who launched our biomedical journey cautioned me against the urge to do everything at once. Nevertheless, when I find an intervention that excites me, I might move too quickly. Even today, four years into Martin’s recovery, I’m prone to that amateur mistake. Other times, I just fail to pay attention and mistakenly start two treatments together. C’est la vie.

Martin looking over St. Bartholomá church, on the Königsee, Berchtesgadan, Germany, August 2014.

Despite my tendency to rush, though, I think honestly I can peg 2014 as the year when I internalized “marathon not sprint.” Sure, for years now I’ve parroted the mantra. Autism recovery is a marathon, not a sprint. Autism recovery is a marathon, not a sprint. But what kind of marathon did I really envision? In my “banner year” post, last January, I wrote, “I now understand ‘the long haul,’” and “I no longer fear that some mythical window will close while Martin is five . . ., or seven, or any age.” Even after I wrote that, however, the notions took some time to sink in. It wasn’t until November, when I wrote the “Journey” post, that I finally abandoned the idea that this process will have an end date. Striving for better health may well be a perennial task, one that Martin needs to continue even after he becomes responsible for his own care. Autism recovery is not a sprint. It isn’t even a marathon. Autism recovery is a lifestyle.

Martin hiking in the Adirondack mountains, near the Great Sacandaga Lake, August 2014.

Behavior-wise, in 2014 Martin took new interest in socializing with other kids. Although he still isolates himself when he becomes overwhelmed, for the most part he wants to be near his friends, even if just to play side-by-side on iPads. Late in the year, Martin also (finally) made progress on nighttime potty training. He wakes now when he needs the potty, and yells for me. “Thanks, kid.” Language-wise, in 2014—well, wow. Martin has been asking “why” questions (like, gazillions of why questions) for a long time now; in 2014, he started answering them, coherently. He’s become conversational, staying on point for multiple exchanges. He can talk on the phone. This afternoon he’s going to call Uncle Eddie and wish him happy birthday! And the perseveration has decreased. Did I mention that the perseveration has decreased? Yeah, the perseveration has decreased. Such a relief.

Martin, on the left, with his cousin Luke, in the Florida Keys, New Year’s 2015.

I am pleased to conclude that 2014 was a banner year in Martin’s recovery. All signs point to significant improvement in health, and corresponding changes in behavior.

May it be one banner year among many.

All of a Sudden, a Whole Bunch More Happens

Posted on October 29, 2014 by findingmykid

I have a lengthy post prepared on “my beef with the GAPS Diet author.” It’s all ready to go. But—

Shelving that post! At least for today. Because I must, must, must tell you about what else Martin did this weekend.

Saturday evening, back at O’Hare to fly home, we saw another family, with a boy about Martin’s age, boarding our flight. The boy was pulling a Cars-themed roller-board. Unprompted, Martin strolled up to the boy and asked, “Did you bring your own suitcase?”

Martin didn’t get to bed until almost midnight Saturday night, so I thought that getting up Sunday morning would be a real problem. It was not. When I entered his bedroom to wake him, I reminded him that it was Sunday and he was going to sing with the kids’ chorus at church. He came to life with excitement. “I’m going to sing with the kids’ chorus!” Then he did it. He sang with the kids’ chorus, three songs. He was too excited and bounced around a little. But he sang and clapped and stayed in more or less one spot, without so much as a point or prod from me. I sat in the front pew and recorded the event.

Also at church, during kids’ time, Martin sat on my lap in the circle with the other kids. When he got fidgety, I asked, “Would you like to go sit with Vincent?”, meaning another boy across the circle. Martin nodded yes (nodded!) and scooted to Vincent. Then, instead of just sidling up, Martin asked, “Vincent, may I sit next to you?” Vincent paused for a second—a very long second, for me—then he smiled and nodded. They sat together the rest of circle time.

Sunday afternoon, we went to visit friends in another town who have a three-year-old, Sebastian. After some initial shyness, and then goofiness, Martin trotted off to Sebastian’s room, and the two boys played together, interactively, for two hours. They sat at a little table and took turns with different objects, and took turns complaining when each thought the other wasn’t sharing. When I called from the kitchen, “Martin, what are you doing in there?”, he answered, “Me and Sebastian are making apple pie,” and then added, “Well, we’re pretending to make apple pie.” Sebastian is, granted, only three. Nevertheless, the interaction was so significant that Adrian said, “What is this? What’s going on? I’ve never seen this before.”

Sunday evening we accompanied the same friends to a jack-o’-lantern display. Martin and Sebastian wore their Halloween costumes (an astronaut and a dinosaur, respectively) and chose to hold hands as they walked.

This evening, Tuesday, I had dinner with the parents of another special-needs child. I told them excitedly about the events described above. One of these parents said, “That’s the thing about special needs. What might sound like nothing to another parent is amazing to us.”

Nailed it.

All of a Sudden, It Happens

Posted on October 25, 2014 by findingmykid

Martin and I are on a flight to Chicago, to see Dr. Zelinsky. Two things happened in the airport:

First, the metal detector. I have my qualms about the effects of metal detectors, but I let Martin pass through them. It’s a nod to convenience, I suppose. Plus, at least it’s not one of those x-ray body-scan machines. I have even more qualms about them. Passing through the metal detector used to be a challenge for Martin. He might be scared, or refuse. When he agreed to pass through, he rarely succeeded without setting the machine off by touching its sides—either he clumsily bumped them, or his hands naturally flew apart for sensory input and balance. After one or two tries, the TSA agent would let me walk though with Martin, picking him up or holding his arms down and his body steady.

Today as we approached the metal detector, I lined Martin up and said, “Walk though carefully! Don’t touch the sides!” To my surprise, Martin stood ramrod straight, pasted his arms to his hips, and walked directly though the machine. Then he iced the cake: On the other side, instead of wandering away, he stopped and waited for me.

Second, the Windy City. As we sat at our gate, Martin watched the information screen and asked questions. “What does that number mean?” “Is that a picture of our airplane?” At some point, he looked at the destination name and said, “Chicago is the Windy City.” I couldn’t remember ever having told Martin that Chicago is called the Windy City, so I asked, “How do you know that?” Martin replied, “Because my daddy told me.”

What’s the breakdown? On and off for months, I have tried to get Martin to understand the question, “How do you know that?” If we are driving and he says, “That’s a hotel,” I ask, “How do you know that?”, trying to prompt him to say that he saw the sign or read H-O-T-E-L. Instead, he responds, “But-because it is.” If he makes an assertion beyond his experience, like, “All kids except me eat popcorn!”, I say, “How could you know that?” He responds, “But-because they do.”

This morning was no such exercise. I wondered how Martin knew Chicago’s nickname, and I asked without thinking about whether he could answer. His perfect response, missing even his trademark “but-because,” surprised me a second time.

Two big successes inside ten minutes! Still, you know me: I must always temper my enthusiasm. While we were waiting in the jet bridge, another passenger saw our seat numbers and remarked kindly, to Martin, that we were all sitting in the same row. This prompted Martin to ask me whether our row had three seats together, or two. When I told him that our row had three seats together, and that someone would sit next to us, he had a little meltdown and yelled, “I’m not ever going to sit in two seats again! Not ever!” He was crying as we entered the plane.

Did I mention the two successes?

Yeah, That’ll Give Me a Good Night’s Sleep

Posted on October 21, 2014 by findingmykid

Yesterday evening, Martin had another real phone conversation with Adrian. “Are you still at the office, Daddy? Are you coming home? When do you think you’ll come? I’m good. I’m drawing pictures with Mommy. Okay. ’Bye.”

Last night, as he was floating to Sleepyville, Adrian mumbled, “These last sixty days or so, it’s so different. He’s like a new kid.”

I’ll take it.

Yesterday Morning Totally Eclipsed by This Morning

Posted on October 8, 2014 by findingmykid

I’m exhausted today. I went to bed at 11:00 last night, waiting up for Adrian, who had a business dinner. I set my alarm for 4:45 this morning and didn’t make it that long. As often happens when I’m waiting for an early alarm, I slept fitfully and woke throughout the night. Around 4:25 am I gave up, rose, and looked out the window.

Bingo! There it was, through a part in the clouds: the massive full moon, just waiting to be eclipsed.

Martin is a moon fanatic. He refers to his children’s books about the moon as his “research” and studies them thoroughly. He tracks the phases of the moon daily. Through his updates, I always know whether the gibbous moon is waxing, or waning. For week’s he’s been looking forward to this morning’s eclipse.

Because Martin was excited, I was excited. I did some research of my own and discovered that this morning was truly special. The total eclipse of the moon occurred simultaneously with the rising sun, an event called a “selenelion.” During a total lunar eclipse, the sun and earth and moon form a straight line. During this perfect alignment, it should be impossible to observe the rising sun. What we see from earth, however, is refracted by our own atmosphere. We begin to see the sun before it actually clears the horizon, and we continue seeing the moon, in all its eclipsed glory, after it has sunk.

From 4:30 until 5:30 am, while I prepared lunches and set bone broth to simmer, I monitored the moon every 15 minutes, waiting for the best opportunity to wake Martin. Unfortunately, the break in cloud cover was short-lived, and soon I tracked the moon only by the brightest spot amidst the clouds. Around 5:40 am that bright spot began to dip below the tree line surrounding our house, and I decided I’d have to wake Martin.

I expected him to be drowsy, maybe to take a look outside and fall back to sleep. That didn’t happen. As soon as I picked him up and whispered, “I’m going to show you the moon,” he woke fully and exclaimed, “We’re going to see the lunar eclipse!”

Thus commenced perhaps the most connected morning I’ve had with Martin in four years. Martin and I stood on the dark patio and peered through the trees, trying to catch the glow’s shift from white to reddish. Martin did not fret that we could hardly see the show. I Googled photos that others were taking of the moon, and he drew eclipse pictures on his whiteboard. We waited for the moment when the sun would appear to rise before the moon had set. When kept the inside lights dim in order to watch the sky brighten.

At 6:20 I asked Martin to wake Adrian. Martin scampered down the hall, yelling, “Daddy! Daddy! It’s time to get up,” Adrian asked what Martin had been doing so early, and then the two of them started discussing the eclipse. Then Martin ate breakfast in semi-darkness as he watched the sky slowly come to day.

Writing this, I realize that what made the eclipse special was not just the connection to Martin this morning. It was that I, who care nothing for the moon, had figured out how the eclipse would work and had taken the time to prepare our viewing. Through my child, I had become interested in something (besides autism!). Following my child, I had learned something.

Which is part of what parenting is about, right?

Finding My Kid

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

Category Archives: Progress