Most Special Guest Post Ever

As you can (ahem!) probably tell, this blog doesn’t get much editing. As to most entries, I draft, read through once, add any links or photos, and post, sans quality check.

Occasionally, however, I request a second opinion before I post, because I’m writing about a friend or relative and want him/her to have the story before the world does, or in order to check whether my words will convey what I want them to. In the entry titled “For Diana,” I wrote to a fellow ASD parent who has commented thoughtfully on my blog over the past two years. The topic of “For Diana” was our disagreement about approaches to treating autism. In that instance, I asked Adrian to read the draft before I posted. I was looking for a gut-check: Was I respectful toward Diana’s position? Did I address her comments without extraneous points? Did I acknowledge my own biases? Adrian did a commendable job. He pointed out one paragraph where my words sounded “snide” (I edited that) and suggested one comment to which I could add more depth (I tried).

And then, to my surprise, he started to add his own thoughts to what I had written. Adrian listens, and responds, when I talk about Martin’s challenges, treatment, and achievements. The “big decisions”—should we try chelation? is HBOT worth the investment? where should we live? where should Martin go to school?—we make together, based on information I assemble for Adrian to review. Beyond those discussions, Adrian rarely volunteers his thoughts about autism, or recovery. Autism recovery is my department. Adrian’s departments are vacation planning, opera excursions, history lessons, and the family economy. Adrian enjoys a probative biography of Nixon; my desk is littered with articles about MTFR mutation. Indeed, if we decide to tell a friend or family member that Martin has autism (we’re guarded, in that regard), I am the one who sits the initiate down for that talk, without Adrian present.

Yet here he was, freely telling me why he thought Diana’s opinion was mistaken. His statements were original, and different, and not echoes of mine.

“You should write that down for my blog,” I said when Adrian finished. “Really. It would mean a lot to add your voice to Martin’s story as it evolves. Otherwise it’s always just me, speaking for both of us.”

“Maybe,” Adrian said. “I guess I could think about it.”

We left the topic at that. I didn’t want to push Adrian. In addition to his autism reluctance, Adrian doesn’t enjoy writing in English, other than technical finance and legal documents. English is not Adrian’s first language, or even his second, and despite his thorough fluency (better grammar than most native speakers, I tell him!), he’s never seemed to gain full confidence.

A month passed. And then almost another month. And then Adrian sent me an email with no re: line and no content other than an attachment titled “martin.docx.”

Here is what he wrote:

I am Martin’s father. My wife, Maria, asked me to write a note for her blog on Martin. The request was made in response to a reader advocating that our approach to Martin’s autism is not worth pursuing. The commentator argued, thoughtfully and politely, that trying to recover a child from autism is tantamount to wanting to “change” the child, while in fact the child was just fine but different. Being “different” would not merit trying to change the child, and could at some point be perceived by the child as a rejection of what he or she is. “I don’t want to return my son to full neurotypicality because I don’t see him as having been in a certain place and then having regressed or changed,” wrote the commentator. “I don’t understand how the language and idea of ‘cure’ and ‘recovery’ is consistent with teaching our kids to love and accept themselves as they are.

The commentator is not alone. Many people in the unwilling community bound by autism argue that there is nothing that requires addressing or treating autism. An autistic person is perfectly healthy and happy, just not neurotypical. It is up to us to accept autistic persons as they are.

Maria and I have a very different attitude towards autism.

To me, autism is a deeply uncomfortable topic. To my wife, it is a topic in which she has simply become an expert. I view autism as a topic that occupies too much space in our lives. Maria sees it more like an important, unavoidable part of our lives. I have been shaken by the existence of autism in our family. She has decided to confront it.

But we both share a commitment to doing everything we reasonably can to bring our son back to neurotypicality.

From my standpoint, this is not about accepting or rejecting one’s child. This has little to do with my personal relationship with my child. This is about the responsibility of a parent to prepare his or her child to live in the actual world.

One of the most critical things a parent has to do is to raise a human being who can, to the greatest extent possible, fend for himself in the real world. My job as a father is not only to love and nurture my child—and, as a result, to be accepting of him—but to prepare him for the world in which he will have to live. Martin will have to live in a world that I will not always be able to shape in a way that works best for him. I may or may not be able to help him and be there for him along the way, and there will certainly be a time when I am no longer going to be able to be there for him at all.

If autism does one thing, it makes a parent realize the thousands of social cues and communication skills that create a successful social interaction.

Martin, for example, insists on yelling “Go away!” to any person who wants to assist him if he happens to be dealing with something by himself. Even among expert professionals (like his teachers), a curt, impolite “Go away!” triggers a shock reaction. Martin is still prone to asking inappropriate questions (“Is that your husband?”, “What year were you born?”, “When did you get into your mommy’s belly?”) of any person he just happens to meet.

But it is not only this kind of obvious behavior that needs to be addressed; it is the more subtle rules of social interaction and communication that make people successful. Understanding, especially what is not being communicated verbally. Listening, to the nuanced messages that adults use all the time. Acting with emotional intelligence. Differencing when one is being attacked or mocked from when one is just being made fun of. Properly interacting with people in positions of superiority or inferiority, and with peers. All of these are the gifts of neurotypicality and of a good and loving education.

Looking at Martin, I see a child who is entitled to be raised in a way that maximizes his ability to navigate the world. That is my responsibility.

There you have it, readers. Adrian is real. He speaks. And you and I, together, have just learned more about his position on recovering Martin than I’ve known in four years—one more way in which keeping this blog has blessed my life.

Adrian messing around, with his niece and Martin on the back.

Adrian messing around, with his niece and Martin on the back.

For Diana

Last week, in response to my “Journey” post, I received this comment:

I read your blog from time to time. We have had a few exchanges, where I argued against the idea of “recovery” and said we just need to support our kids to be successful. You said you thought that was mincing words and we both want the same things. I’m really glad to read that Martin is doing well and progressing. I’m sad to hear you are still trying to “recover” him. Some day he may read what you have written. And he will want to tell you that he wasn’t lost, just different. Keep helping him, of course, but maybe this holiday season there is a moment to see that he is not lost? It is a big job, I know, but it is tough on a kid when “fixing” him becomes his mother’s project. That is a lot to put on you both. I wish you well.

The comment comes from a woman I’ll call “Diana.” I don’t know her, except insofar as she is also a lawyer in the New York City area (that’s what I am), and insofar as she has a son with Asperger Syndrome, who I believe must be 10 or 11 years old now. Diana and I exchanged some comments on this blog in April and May 2012, and again in January 2013; we were respectful of each other’s positions on handling autism, and as is evident in the comment I’ve pasted above, she continues to be positive and respectful. I appreciate that, and I thought that, rather than tuck my response into the less-read comments, I would post it front and center.

Diana, this is for you—

Two and a half years ago, you wrote to me skeptical of the concept of ASD recovery. About your son, you said, “I want him to be proud of who he is and how he is. It is a hard balancing act, because I also want to improve his social skills and give him the most options, so to some extent I am working always to decrease how his ASD presents.” When I engaged you in discussion, you elaborated:

I do remain skeptical of recovery as a concept, but how to approach treatment is up to each parent and there are no clear answers. But the larger question, I guess, is that I don’t want to return my son to full neurotypicality because I don’t see him as having been in a certain place and then having regressed or changed. I don’t perceive an assault on who he is by ASD.

Eight months after that comment, in response to a post I wrote about Adam Lanza, the Newtown gunman, you said this:

. . . I don’t understand how the language and idea of ‘cure’ and ‘recovery’ is consistent with teaching our kids to love and accept themselves as they are. I don’t doubt your sincerity. But for me, I want to help my kid but not cure him. I really think autism is a big part of who he is. For me, lots of therapies are great and work well—but they are seeking to assist and not to fundamentally alter my kid. I like my son autistic and I like other family members of mine autistic. I would encourage you to check out and watch the video there—it is a very smart introduction to how functioning autistic adults feel about this question. If we want our kids to be happy adults, I think we need to listen to these adult voices first and foremost. My hopes are the same as yours and I know we are all just trying to do the best by our kids.

We are all trying to do the best by our kids. I believe that, and I appreciate your recognizing and acknowledging it. Still, to be honest, I don’t think, at least not now, that we are undertaking the same goal and just mincing words. Our hopes are not the same: You hope to raise an autistic son whose behaviors are typical enough that he can function in society. I hope to raise a son who has no trouble functioning in society because he is typical.

Autism spectrum disorders do not just happen. They are not random behavioral conditions. Autism is not an individualized Weltanschauung, like the way my brother Eddie is super laid-back and my friend Stacey is Type A. Autism spectrum disorders are the manifest symptoms of health problems, most usually compromised immune function. We continue to debate the extent to which these health issues result more from genetics (MTHFR mutations, &c.), or more from environmental triggers (vaccines, GMO’s, toxins like synthetic chemicals, &c.). What is no longer up for debate, unless you ignore all current science, is that if your child has an autism spectrum disorder, he has some combination of underlying conditions affecting his health, and those conditions are resulting in neural misfires.

Your approach—and I invite correction if I am wrong—seems to leave the health conditions that result in Asperger’s uninvestigated and untreated. Instead, you rely on behavioral therapies “to improve his social skills and give him the most options,” because you are “working always to decrease how his ASD presents.”

You “remain skeptical of recovery as a concept.” I will say that I, personally, within my own circle, know three boys, ages 19, 15, and 12, who have recovered from autism. These are not children whom I have “heard of” or “read about.” They are boys whom I know. I can, and do, talk to them and their parents. Each of the three was diagnosed with autism, from mild to moderate, at age two. They recovered fully, by their parents’ estimation, at ages 8, 12, and six. They are not “quirky.” They no longer have rough edges or trouble with social skills. They are, for every purpose I can see, restored to typical neurofunctioning. They reached this point because their families treated their underlying health conditions, as I am doing with Martin. I know that every child is a puzzle, that not every child who is treated biomedically will recover (at least not with what we know today), and that Martin’s “autism” symptoms may, to whatever extent, persist his whole life. But if you need to know what “recovery as a concept” means, it means this: restoring a child’s immune function and overall health, which in turn alleviates autistic behaviors symptomatic of compromised health.

You “like [your] son autistic and … like other family members of [yours] autistic.” I adore my child. I will adore him whoever he is and however he behaves, a fact that I impart to him daily. But I do not “like” his being autistic, because his being autistic means his health is compromised. If I were to learn today that no biomedical intervention would ever change Martin’s behavior in any way, I would still continue with his special diet and homeopathy and supplements because I want to restore his health. I cannot think of another condition that I would leave untreated, so why would I stop treating his gut-flora imbalance, candida overgrowth, or mitochondrial processing disorder?

You encourage me to consider the experience of autistic adults when determining what course to pursue with Martin. I do. I have read at length about how demoralizing traditional behavioral therapies can be for persons with autism, about how ABA can frustrate and even humiliate its subjects. (Not all ABA. Some practitioners who begin with ABA and find their way to a gentle approach.) I referred above to a 15-year-old I know who reached recovery around age 12. His mother reduced his behavioral therapies after he protested, “Mom, they want to change everything about me!” By contrast, the family continued and even increased biomedical treatment, which by the end of his recovery process, the boy was requesting because of the way it made him feel better.

When Martin asks about why he cannot eat Goldfish® crackers, I explain, “Oh my goodness! If you eat those crackers, you will get those funny poopies, and the ingredients will make it hard to pay attention in school. Remember how that happens sometimes?” The culprits in this equation are the processed crackers, and how they affect Martin inside. When your son asks why you want to “improve his social skills” and “decrease how his ASD presents,” how can you respond? Is the culprit crackers and firm bowel movements, or does the culprit seem like him?

Martin does not know he has autism. He has never heard that diagnosis. He knows that he eats a restricted diet because some foods “hurt his belly” or “make his tummy do funny things.” He knows that the drops and supplements he takes are like Mommy’s vitamins and probiotics, a good idea for almost anyone. We don’t do traditional behavioral therapies. I have found that most traditional therapies—ABA, speech, even to some extent occupational and physical therapy—come with the theme, “Don’t [sit, rock, behave, chant, stim, &c.] that way. That is unacceptable. Try to fit in.” I don’t want Martin to hear that he needs “some work around the edges” (your phrase, from a comment on 23 April 2012). Martin’s behavior isn’t what needs work. His behavior naturally adjusts as his health improves.

(Note: Martin receives traditional OT and PT at school, because they are on his IEP. In that regard, I am grateful that he attends a self-contained special education school, where every student participates in OT and PT, so that they seem like a standard part of the curriculum rather than something directed at changing Martin.)

At your request, I checked out; it presents testimonies similar to others I have read, from autistic teens and adults. In return, let me point you toward stories like What Is My Mother Doing to Me?, which was written by a 14-year-old in gratitude for his recovery. I hope that Martin will not have to tell anyone what it is like to be an autistic adult, because he will never know. And if he reaches neurotypicality, I don’t think either of us will regret the result. As I have written before, in all my experience communicating and working with other ASD families, I am yet to hear from anyone who regained his/her health biomedically and subsequently says, “I wish we hadn’t done this. I prefer being autistic to being neurotypical.” (My sample size is not restricted to the three aforementioned recovered boys whom I know personally. I know of dozens of recovered persons, on-line or otherwise.)

You seem to worry that Martin will one day read what I write on my blog. To that I say, he’d better. In part, I write this blog for Martin. I don’t think he is “lost” or that his personhood needs “fixing.” I’m not sure why you use those words. Two weeks ago, when I got socked with a virus and ended up in the hospital, I wasn’t “lost” (except maybe insofar as I passed in and out of consciousness…!). My immune system needed help fighting a health condition, and when I received that help, I recovered. My son’s immune system needs help. I’m struggling to give him that help. I look forward to the day when he understands what I’ve written here, when he receives confirmation that he is so precious and so loved that Adrian and I would scour every corner of God’s green earth to give him every advantage we can.

So that’s it. Your and my disagreement lies in whether it is preferable to treat the health conditions that underlie autism, and let the behavior do as it will, or whether it is preferable to leave the health problems untreated and try to “smooth” the resulting behavior. I’ve phrased the question in a biased way, of course. I’ve done so because I believe it is preferable to treat “autism” biomedically. You take a different approach, and that is fine. We’re cool. I don’t have all the answers.

I do hope you’ll stick with the blog, though, and continue to comment. I feel invested in your son and your journey. I pray that it leads you both to a place of contentment.

Martin in action at the trampoline gymnasium. Not lost. Just getting healthier.

Martin in action at the trampoline gymnasium. Not lost. Just getting healthier.

Because They Know

If you’ve been reading this blog for a while, you know about my love-hate relationship with social media. Something about operating on-line makes people thoughtless. Combine that with my hyper-sensitivity on autism and child issues—the result is potential meltdown every time I log on.

One particularly problematic area for me is constant Facebook updates about amazing children, written in some superficially deprecating fashion. “No other kid in Caleb’s figure-skating lessons can even axel. Can’t believe I can’t afford anything better for a kid who already lands a lutz!” Or: “I really love Woody’s new teacher. Look at this certificate she made him for getting the highest reading scores in the class.” Or: “Clementine is district chess champion. I feel a little less like I’m depriving her by not being a soccer mom.”

I get bitter.

Strangely, it is only the amazing-kid updates of distant friends that bother me. I like reading when my close friends—the kind of friends I visit, and telephone—post about their children.

I’ve come up with two reasons for the difference.

First: My close friends don’t do the superficially self-deprecating thing. They just brag. I’m not sure why that’s less offensive, but it is.

Second: They know about Martin.

When it comes to social media, I’m constrained, because we’ve chosen to keep Martin’s autism confidential. Adrian and I are careful not to post anything that makes our son appear atypically developing. We share the one picture in ten in which Martin actually looks at the camera. We write the cute things he says only when they sound like what any four-year-old might say, or else we edit to keep the gist while fixing the words. Of Martin’s true successes, I cannot boast on-line. “Martin chased a boy at the playground for, like, at least five seconds before he lost interest!” “Martin had a four-exchange conversation with his babysitter!” “In the midst of bolting down the sidewalk this afternoon, Martin turned around to see if I was following him!”

My close friends know about these successes, even if I can’t share them publicly, because they know about Martin. Last Memorial Day, as we do annually, Adrian and Martin and I got together with some of my closest girlfriends from high school. This year six families attended the gathering. The other children, all older than Martin and all typically developing, played with him as if he were their own little brother; they were patient, occasionally teasing, responsibly keeping him from trouble. From the parents I heard nothing but swooning. Martin was talking so much more than the previous year. Martin’s eye contact had improved. Martin had better command of his movement.

No strange looks to endure. Nothing to cover. Only compliments.

I felt like a million bucks.

When Martin and I visit his doctor in Chicago, we follow a two-day pattern. On day one, we fly from LaGuardia to O’Hare, rent a car, see the doctor, buy groceries at a Whole Foods Market, and check into a hotel “suite” with kitchenette, where I prepare Martin’s dinner. On day two, Martin and I eat breakfast at the hotel, return to the doctor’s office if any follow-up is necessary, then spend the afternoon at a friend’s home in Elmhurst, not far from the airport, and finally catch an evening flight back to LaGuardia. The Elmhurst friend is a high-school classmate, with a toddler of her own, and a most considerate hostess who prepares some fantastic vegan lunch for me while I co-opt half her kitchen to cook for Martin.

Several months ago, I awoke sick on day two of a Chicago trip. My head was pounding, and I was nauseated. A hot shower didn’t help. Nor coffee. Nor dry toast that I ate with my head resting in my palm. And poor Martin—I had no one to help out, and with no energy or patience, I was content just to get him and our things moved somehow to the rental car.

Almost the moment that I settled onto my friend’s sofa in Elmhurst, my situation began to change. My shoulders relaxed. The headache evaporated. It had been tension, of course. I’d gone to bed with a slight cramp in my neck, and made myself sick by worrying all night about what I would do if I got sick and had no one to help with Martin. Once we arrived in Elmhurst, I knew that if necessary I could say, “I need to crash in your bed for the rest of the day. Here are Martin’s pills and food. Good luck.” And my friend would have replied, “See you tonight. Yell if you need anything.” There was no longer any need to worry, and I felt better.

That’s the way it works, with friends who know about Martin’s autism. They’ve got my back. They procure food for Martin, cook for him, ask about his needs, encourage his friendships, celebrate his successes. And so I do the same for them. It’s like we’re one big family, sharing kids. I want to hear about their amazing kids, because those kids are mine, too.

I can’t take that feeling to social networking in general.

I suppose this blog is my brag book, instead. My anonymous brag book.

Sorry about that, readers.

Not the best-quality picture! Martin was so determined to flush this airport toilet with his foot that he climbed onto the fixture to manage it. I hardly had time to whip out my smart phone and capture the moment.

Not the best-quality picture! Martin was so determined to flush this airport toilet with his foot that he climbed onto the fixture to manage it. I hardly had time to whip out my smart phone and capture the moment.

High Score

Monday evening Samara babysits Martin. It’s my big night on the town.

As I was leaving yesterday, around 5:30 pm, Samara was heating dinner and Martin was playing in the loft space above our entry hall.

Playing alone. Score for Martin.

From the living room, I yelled, “Martin! Where are you?”

Martin appeared in the loft door.

Understanding that I needed to see him. Score for Martin.

“I’m leaving now,” I said. “I love you very much.”

“I love you too, Mommy.”

An appropriate response, including the use of “too” and addressed directly to me. Score for Martin.

I asked, “Can you blow me a kiss?”

Martin placed his hand to his lips, then waved it toward me.

Direction, albeit simple direction, followed. Score for Martin.

I tossed a kiss at him and departed.

Later, after drinks with parents from Martin’s school, I met a church friend for dinner. This friend knows that Martin has autism. At some point during dinner, he said, “I hope it’s okay to say this and it doesn’t make you mad or anything: When I see Martin at church, he looks just like all the other kids.”

A friend doesn’t want to offend me when he says Martin looks like any other kid. Score for everyone involved.

Der Process

I’ve written before about my scrapes with the Transportation Security Administration.

I travel with Martin, a lot. When we fly, I carry his myriad pills and drops and liquids and compounded formulations in a heavy-duty black shoulder bag. (It’s repurposed. Once upon a time the bag held my breast pump.) Many of the supplements that aid Martin’s recovery are homeopathic and otherwise imprinted or finely calculated. I will not allow the supplements to pass through the security x-ray, because it can scramble their delicate properties.

Because of Martin’s special diet, I also have to carry food in my knapsack. In the past, my go-to has been nut butter with rice crackers. Now I like coconut butter with crackers. The TSA doesn’t like either.

The scene changes each time we pass security.

Regarding food, I’ve been told, at various times:

(1) nut butter is no problem and can come on the plane;

(2) nut butter is a problem unless it is in a sealed, unopened container;

(3) nut butter cannot be in a sealed, unopened container because all those containers are too big;

(4) nut butter is exempt from security if I’m carrying a doctor’s prescription for Martin’s restricted diet (I always am);

(5) our doctor’s prescription for Martin’s restricted diet makes no difference to what we can carry on the plane; and

(6) we can bring nut butter on the plane only if I leave the security line, take all of my belongings and Martin to the food court, request to-go containers from some restaurant, divide the nut butter into three-ounce portions among those allegedly available to-go containers, and return to security with the newly packaged servings. On the day that this food-court option was given, the TSA agent insisted that the repackaging could be accomplished in the ten minutes before our flight was to board. It became one of many flights on which Martin ended up without nut butter.

I never know which story we’ll get about the nut butter, or coconut butter, when we reach the front of the security line. And yet, traveling with Martin’s food is a piece of cake—sorry—compared to carrying supplements that should not be scanned.

We’ve been in Texas, on Thanksgiving vacation. Last week, when Martin and I flew from New York to Texas, we encountered a sympathetic TSA agent. I unloaded everything from the black bag into a gray security bin. The agent took the bin immediately, asked what it contained (“My son’s medications”), used one swab to check all bottles quickly, and called Martin a beautiful boy. I repacked the black bag, and we were on our way in less than five minutes.

This morning, preparing for our flight home from Texas, I requested a hand-search of the supplements. I unloaded the several dozen bottles from the black bag into a gray security bin. No one came to take the bin. A TSA agent had me stand in front of the metal detector holding it, as passenger after passenger walked by, each (it seemed) examining the contents of my bin as s/he entered the metal detector. I heard, “Hand-check on one!” called several times, but the agent in charge of hand-checking decided to restock the gray bins of three lines before showing up, so I stood in front of the metal detector a full five minutes with my bin. At length a female TSA agent approached and offered to set my bin aside while we waited for the elusive agent in charge of hand checking. Then I stood, bin-less, another two or three minutes until I was invited to pass, not through the metal detector, but through a full-body scanner, the next line over.

Adrian traveled with me and Martin today, thank goodness. While I stood there waiting, Adrian accompanied Martin through the regular metal detector (long-time readers of this blog know my misgivings about the metal detector) and collected my laptop, knapsack, boots, and jacket from the conveyor belt. On the other side of the full-body scanner, I was informed that, because I had requested a hand-search of Martin’s supplements, I would be subject to a full-body pat-down. I’ve received the pat-down treatment maybe twice before; its necessity appears randomized. A male agent ushered me into a glass-wall-demarcated waiting area and told me to await a female agent. I stood, on display in my glass-walled enclosure, until yet another agent moved me to a chair. Some twelve minutes had elapsed since I took off my boots for security.

The female agent materialized, donned latex gloves, and told me to stand with arms outstretched while she ran her hands over my body. Meanwhile, a male agent began swabbing each individual bottle of Martin’s supplements. He swished the swab cloths through a machine, which at one point sounded an alarm. He relayed the alarm news to the TSA supervisor, who alit from his perch behind us and asked which bottles were in the alarm group. Apparently 18 bottles were in the alarm group. The TSA supervisor instructed the agents to open each of those 18 bottles and retest with a sample stick.

Next the supervisor asked, “Are these all your belongings?”, indicating the black bag and assorted supplements.

I should have said yes. Instead, I answered honestly: My husband had the rest of my belongings.

And where was my husband?

Over there. I indicated where Adrian had taken Martin to sit on a bench.

The supervisor demanded Adrian’s return. Adrian complied, carrying his briefcase and my knapsack.

The supervisor ordered a hand search of my knapsack, which had already cleared the x-ray machine. Then, for reasons unclear to me, he told the agents to seize Adrian’s briefcase and search that, too. Adrian surrendered the briefcase and returned to the bench to occupy Martin. By now 20 minutes had elapsed since I removed my boots.

The female agent sat me in the chair again, to run her hands over the soles of my feet. With the pat-down thus concluded, she began opening bottles of supplements to sample.

“You can’t do that,” the male agent admonished. “Make her open each bottle.”

He meant me. I rose from my chair and picked up a bottle.

“You can’t do that,” the male agent admonished again, this time directed at me. “She has to hold the bottle while you open it.”

I gave the bottle to the female agent, who grasped it in a latexed hand while I unscrewed the top. Then she dangled a paper sample stick over the top of the bottle, dropped the paper stick into a magic container, and asked me to recap the bottle.

Then she picked up the next bottle. The next of 18 alarm-group bottles.

The male agent opened a small cooler containing Martin’s refrigerated supplements and an ice pack. He told the female agent she should sample the refrigerated items, too.

Bottle open, paper stick, magic container, bottle closed. Bottle open, paper stick, magic container, bottle closed. Bottle open, paper stick, magic container, bottle closed.

Beside us, the male agent emptied Adrian’s briefcase. Bond indentures, credit agreements, and a Longhorns t-shirt spread across the table. More than 30 minutes had elapsed since I removed my boots.

The female agent glanced at the supervisor, now atop his podium again, and whispered, “I’m sorry about all this.”

I have a son with autism who takes a million pills and drops a day. Everyone here is staring at us. I am all for airline security, but why do some TSA agents have to make this an extended production while others let us through with hardly a pause?

I said, “These are my son’s medications. I really don’t like them handled.”

She shook her head. “I know. I’m sorry.”

Bottle open, paper stick, magic container, bottle closed.

The male agent announced that he couldn’t fit Adrian’s laptop back in the briefcase. Adrian left Martin sitting on the bench and came to gather his documents and other belongings.

Bottle open, paper stick, magic container, bottle closed. Finally the agent finished, leaving me with an empty black bag and a table covered with bottles. I started returning everything to the bag, embarrassed by a few tears of frustration.

Some 40 minutes after removing my boots, I carried the black bag and my knapsack to the bench where Adrian had the boots waiting for me.

“Is it always this bad?” he asked.

“No,” I said. “Sometimes it’s better.”

We started walking toward our gate.

“And sometimes they do all that while I also have to keep track of Martin. And then it’s even worse.”

Wondering Where Recovery Lies

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.