Del Sur I: This Completely Sucks—Wait! Did He Just…?

Martin and I have spent last week visiting Adrian’s country of origin and my in-laws there. (Adrian did not join us. Evidently “family duty” falls entirely on me these days.) Back in January, I used each of four New Year activities as a heading for a “Martin right now” mini-essay. Now, a week in South America gives me five vignettes for pondering autism recovery. Without further ado:

Del Sur I: This Completely Sucks—Wait! Did He Just…?

I wasn’t sure we’d make it to South America. Our flight was set for Friday afternoon, first to Miami and then, overnight, farther south. The Sunday previous, Martin asked to leave a class play date early, asserting that he didn’t feel well. Adrian and I weren’t sure whether Martin was ill, or just overwhelmed by the crowd; in any event we took him home, where he felt well enough to ride his bicycle. Monday he went to school and to personal training, where the instructor reported that he seemed tired and “out of it.” He coughed a lot during the night but recovered Tuesday morning and went to school.

Lunchtime Tuesday, the school nurse called me. Martin had a fever. I brought him home, tucked him onto the sofa with his stuffed animals and Disney Junior channel, and kept him hydrated. The special-education teacher who cares for Martin Tuesday evenings opted not to come, because she is pregnant and didn’t want risk illness. I cuddled Martin. I didn’t want to leave him. But Adrian was out of town and I had tickets to the RangersPenguins game.

“…And then I called Samara, his nanny, and asked her to come watch my sick kid. I’m the worst parent in the world,” I told my cousin over our pre-hockey beers at Stout. 

“It’s the Stanley Cup playoffs. There are no bad parents,” he replied, sensibly.

Wednesday morning Samara stayed with Martin while I, hung-over and stung by the Rangers’ loss, headed to my office in Brooklyn. When Martin still had a fever Wednesday afternoon, I returned home and drove him to his pediatrician, who took a nasal swab and diagnosed influenza. I explained that we were supposed to board a plane 48 hours later. Give him Tamiflu, the pediatrician said. No, I responded, Tamiflu is too dangerous. Any other options? You can try Oscillococcinum, but it won’t work, she said. Can we fly to South America? You can fly to South America if the fever breaks by Friday morning.

That gave us 36 hours to eliminate the fever.

I started Martin immediately on Oscillococcinum, which probably I should have done at least a day earlier. Thursday he was still sick, alternating naps with playing, his temperature bobbing. Thursday night I was climbing into bed around 11:00 pm when Martin called, “Oh, no!” He had vomited in (more specifically, all over, and around) his bed. I scrubbed Martin and tucked him into my bed—Adrian was still out of town—, cleaned the mess, and was pleased when he subsequently slept through the night without incident.

Friday morning Martin woke without fever. He still wasn’t 100%. But he stated, adamantly, that he was prepared to get on the airplane and visit his abuelos y tíos y primos. Tentatively, I packed. Martin remained insistent, even as he fell asleep on the sofa. At lunchtime, I conjured a deal: We would go to BareBurger. If Martin felt well enough to eat a full meal, and hold it down, we would continue to JFK.

BareBurger has organic meat and gluten-free sweet potato fries cooked in non-GMO canola oil. Not perfect but, some days, a godsend.

Martin met my challenge, we boarded the flight to Miami, he slept eight hours on the overnight flight to South America, my mother-in-law retrieved us from the airport, and all this serves as backstory to Saturday, because Saturday sucked.

Last February, Martin did pretty well with his paternal cousins. He’s improved a lot since then, socially, so this year I expected instant interaction. I’m so foolish. Saturday, when three of his cousins arrived, including one close to his age, Martin responded by thrusting his face into my mother-in-law’s sofa and pointing his butt in the air toward the other kids. Okay. Haven’t seen that behavior in a while. I covered by saying something like, “Oh, Martin, have you decided to be shy?”

Next, Martin refused to speak to his cousins and directed all comments exclusively to me. I covered by claiming his Spanish was rusty.

Next, my father-in-law attempted to show Martin pictures of a recent family vacation. The cousins snuggled with their abuelo and admired the photographs. Martin stood behind them all and broke into a crying meltdown because he hadn’t gone on the vacation. I escorted Martin to his bedroom, calmed him, set him up for some solo time with his iPad, then returned to the living room and covered by claiming Martin’s fever had returned.

When I have a fever, I cry. Tears flow from my eyes, even if I feel well and am not upset about anything. That’s where I got the idea to say Martin had a fever that was making him cry.

By the afternoon meal, Martin had pulled himself together enough to join us at the table, but he ate in silence and refused to interact. I remarked continually on how unusual the withdrawal was, how really tired and still-kind-of-sick Martin must have been.

All the covering, of course, was designed not to let Martin’s cousins think he’s weird.

Toward evening Martin managed to join his cousins on the sofa. He didn’t talk to them, and they, engrossed in television, didn’t talk to him, either. My sister-in-law, mother of the cousins, deteriorated the situation further by commanding her 10-year-old son, “¡Habla con tu primo! Speak slowly! Stop watching television and speak to your cousin! More slowly! His Spanish is rusty!” The hapless 10-year-old said, “Um, ¿hola, Martín? Hooooooooooooooo-laaaaaaaaaaa, Maaaaaaaaaaaaartiiiiiin,” at which the other cousins laughed and Martin looked confused.

When his cousins finally prepared to leave, Martin re-commenced crying because, he claimed, he wanted them to stay.

Super.

My kid was exhausted, overwhelmed, out of his element, and probably still sick. His cousins, I am certain, thought he was weird.

A couple hours later, with Martin asleep for the night, I dialed Adrian on FaceTime. I decided to spare him the full report and give him instead this 100% accurate, albeit heavily edited, account of the day: “Guess what happened? Martin learned to blow his nose. He was crying and stuffy from his flu, and I gave him a tissue and told him to blow, and it finally clicked. I’ve been trying to teach him for years to blow his nose. This afternoon he managed. Hurray! Everything is great!”

Contributions

If you read yesterday’s tedious post about a Tuesday morning, you may have asked yourself why I, your blogger, was the parent doing everything. Adrian, who is not only my husband but also Martin’s father, was at home that morning. His role in the story was limited to showing up for toast and coffee, showering, and leaving later than usual in order to drive me to the train station. And goshdarn it, he got to sleep until 6:30.

Autism recovery is long and expensive. You know that. For me, the heartbreaking posts in my on-line biomed groups are the ones like, “I’m trying so hard to help my child, but my husband subverts everything I do,” or, “Before autism, we had a real marriage, but now I’m married to him only because I need the insurance,” or, “I’ve become a single parent, with limited resources. If you had to pick either organic food or supplements, which one would you buy?”

If parents intend to navigate the autism-recovery journey together—or even remain a loving, adult couple in the face of autism—they need to find their way to the same page, i.e., to talk openly and craft a mutually acceptable plan. In our family, by agreement, the division of labor is this:

Me:

Research treatments; schedule all doctors and therapists; plan necessary travel; monitor diet; procure and prepare special food; order and administer supplements etc.; coordinate childcare for when I’m working or otherwise unavailable; oversee detox baths and sauna use; inquire about and visit schools; keep medical and school records; serve as activity chauffeur; monitor home environment; be assumed-on-duty parent at all times except when advance arrangements are made (“Saturday afternoon from 1:00-3:00, I need to edit a brief. Can you take Martin?”).

Adrian:

Earn the money to pay for all this.

Whether this arrangement is fair depends on your viewpoint. I am the parent who had to give up my career in order to handle Martin’s recovery effectively. That being said, I am also the parent lucky and privileged enough to be able to surrender an office job and devote my hours to Martin. I am the parent who gets less sleep in order to juggle all that needs to be done, and who manages the stress of autism/ADHD. That being said, I am also the parent without office and workplace stress, with more freedom in how I organize my time. I am both the parent who has to do most of the day-to-day decision-making and the parent who gets to do most of the day-to-day decision-making. Adrian cannot cook or prepare supplements or measure detox baths; when I must travel alone, Martin’s nanny Samara stays in our home to take care of him. To take care of Martin and Adrian both, really. That being said, Adrian never begrudges my time away from home.

Moreover, whether our arrangement is fair does not matter one iota, because it is the arrangement that works for me and Adrian. The very big decisions, such as whether to undertake chelation, or where Martin should attend school, we make together. I may go so far as to prepare a presentation of alternatives, with supporting information, so that Adrian can help make an informed choice. My being the biomed parent does not negate Adrian’s being an enthusiastic and involved father. Martin is Adrian’s Mini-Me. They dress alike, go to the gym together, rock-climb together, ride bikes together. They get the more typical parent-child relationship. I get the rest of it.

Adrian likes to say that it’s to my credit, not his, that Martin is doing so well. He calls Martin my “masterpiece.”

I respond that I couldn’t manage this process without my partner.

Past Tense

Years ago, when we were only a few months into Martin’s recovery, I was leafing through a magazine I found in our doctor’s waiting room. I don’t remember the publication’s title, or even its purpose; I think it may have been a resource for parents pursuing biomed.

What I do remember were a couple of personal-experience pieces written by typically developing teenagers in support of their ASD siblings. In one, a girl whose brother was already recovered talked about her brother’s autism and how it had led her to advocating on behalf of students with disabilities. Although my memory of the other details is nebulous, I can still recall this phrase: “During the time my family was affected by autism . . . .”

Those words struck me. They were so comforting, how they suggested that there can be an other side to autism, a time when autism is not a daily struggle, when recovery is not the long road (to where?) ahead, but when the reality has become a memory.

I’ve written now and again about autism symptoms that are so far gone that they no longer exist in my daily consciousness.

Martin, for official/school purposes, has lost his autism diagnosis.

We still have work to do. Lots of work. Martin’s executing functioning—meh. As a corollary, Martin’s attention span and ability to plan—ugh. Martin still has a diagnosis. “ADHD,” our new territory.

Yet—.

Last week I attended a conference in California, for the consumer advocacy work I do. I was meeting with the director of a non-profit organization devoted to monitoring toxins in personal-care and household products. She asked how I became involved in representing consumers.

I said, “Through my son. He had autism.”

Attention-Deficit Hyperactivity Disorder (ADHD)

Because we are thinking about changing Martin’s school placement, Adrian and I decided to order a new neuropsychological educational assessment (a “neuropsych”). Martin also had a neuropsych three years ago, before he entered kindergarten, and last year. Those first two neuropsychs were completed by Dr. DS, a practitioner in Manhattan. This time we switched to Dr. PS, a practitioner in a suburb near ours, who knows our local schools and who had never before met Martin. Dr. DS and Dr. PS are mainstream neurodevelopmental psychiatrists, not biomed practitioners. Before Dr. PS started her testing, I enumerated Martin’s issues at this time: paying attention, sitting still, emotional regulation. I did not say “autism,” though she certainly must have seen that word on the previous neuropsychs and the school records I provided.

We had our parent meeting with Dr. PS last week, after she’d had three lengthy testing sessions with Martin. She told us that Martin’s primary trouble lies in executive functioning. She diagnosed him with ADHD, compounded by social/pragmatic language delays.

She didn’t mention “autism.”

Adrian asked, “You’re saying he has attention deficit and hyperactivity?”

Dr. PS answered, “Really, hyperactivity is a minor part. The primary issue is attention deficit, this inability to focus. That stems from the executive functioning and affects his performance in many areas, including school.”

Adrian is Adrian. He likes concrete, definitive responses. He asked, immediately, “Um, why don’t you think Martin has autism?”—not the question I would have posed. I like to leave well enough alone.

Dr. PS said that different practitioners come at executive functioning in different ways. Martin, she said, presents with “a little bit of this, and a little bit of that,” such that, perhaps, a doctor focused on autism might find a mild spectrum disorder. In Dr. PS’s opinion, however, Martin “does not meet the diagnostic criteria for autism spectrum disorder.” He presents much more strongly as a child with attention deficits. True, he retains difficulties with social/pragmatic language, but he is eager to socialize and keenly aware of others. No, she concluded, he doesn’t have autism.

“So,” I said to Adrian as we climbed into bed that night, “we don’t have a son with autism anymore.”

Adrian paused. Then he replied, “I guess we’ve known that for a while.”

I guess we have.

Martin can express himself, now. Martin doesn’t really have repetitive behaviors, anymore. Martin’s perseveration, which once was literal inability to stop speaking, has faded to a penchant for prattling about obscure topics, like marching bands and features of my car’s dashboard. Martin knows exactly what other kids are up to. He won’t let me affix a sport strap to his glasses anymore, because “Zach and John don’t have straps on their glasses.” Martin is awkward, socially, and his attention span has the half-life of hydrogen-7. But “autism”? These days, that seems too harsh.

On the other hand, it feels strange—to say I don’t have a son with autism. We still have a lot of work to do with Martin’s executive functioning, and the spectrum has been a driving component of our life, even of my own identity. We socialize with other autism families. We swap articles about autism. I even pre-board airplanes, on the basis that “my son has autism.” (The pre-boarding will have to stop. I will let airline attendants draw their own inferences, but I won’t lie.) Autism, autism, autism. What do I do now? Find ADHD friends?

Adrian and I have never been public about Martin’s diagnosis. Indeed, we’ve gone to lengths to hide his autism. In part, that’s because “autism” is a scary word. ADHD or ADD, not so scary. People seem to love to self-diagnosis with ADD. Maybe now we can go public with that moniker.

Almost six years ago—the summer that Martin turned two—was when Adrian and I started to realize that Martin had “issues.” Other kids blew out the candles on their birthday cakes. Martin stared into the abyss over his own cake. (We later discovered he lacked the ability to pucker, or to blow.) In the toddler soccer program, when the coach said, “Run and kick a cone,” nine kids ran and kicked a cone. Martin wandered to the next field and tipped over the goal.

By that fall, we were sufficiently concerned to ask a high-school friend of mine, an EI provider, to come take a look at Martin. She did, and she knew immediately that he had autism. The first psychologist, sent by New York City only a couple weeks after my friend saw Martin, said, “It’s autism. You might call it ‘high-functioning autism,’ or, ‘Asperger’s syndrome’.” But though Adrian and I didn’t realize it, Martin was backsliding. He had already lost eye contact and was becoming less responsive every day. By the time the Big Imposing Hospital’s neurodevelopmental team got hold of Martin, several months later, there was no mention of “high-functioning” or “Asperger’s.” They diagnosed Martin with moderate autism and threw in the kitchen sink of co-conditions: delays in every type of communication, low muscle tone and lack of proprioceptive awareness, sleep disorder, possible cognitive impairment, and on, and on, and on.

Let’s call that the low point.

Fortunately, we had already started biomed and the tedious brick-by-brick struggle to free our son from autism.

When he was three, Martin’s special-needs preschool removed him from a self-contained 12-1-1 classroom (12 special-ed students, one teacher, one aide) based on his need for more supervision, and his inability to keep up with the other developmentally delayed three-year-olds. The school placed him instead in an 8-1-2 classroom, in which two other students had 1-on-1 aides (in total, eight special-ed students, one teacher, two classroom aides, and two dedicated aides). Martin was left in that classroom for two years.

When it came time to find a kindergarten—we lived in New York City, where kids don’t just go to the local school, as they might elsewhere—we had Martin’s first neuropsych done. Dr. DS, the Manhattan neurodevelopmental psychologist, confirmed the autism diagnosis as “not a close call.” He told us that our desired elementary school, which has 12-student special-ed classrooms, would not provide enough support for Martin, and would be likely too advanced, academically. He said we were “really looking more at a need for 1-on-1 support” or a six-student ABA classroom.

Forget that, Adrian and I decided. When the desired school, with the 12-student classrooms, accepted Martin, we sent him there. And he excelled.

Two years later, before second grade, it was time for another neuropsych. To get a reasonably comparative assessment, we brought Martin back to Dr. DS.

Dr. DS admitted that he had been mistaken to think Martin wouldn’t make it at our chosen school. In fact, Dr. DS was not so sure Martin still needed all the support the school offered. “I’ve seen some remarkable progress,” Dr. DS said when he presented us with Martin’s report. Martin had moved from the third percentile to the 83rd percentile in receptive language, for example, and though the autism was still prevalent, he had made tremendous gains in other areas, too. What were we doing?

I told Dr. DS about our biomed protocol and nontraditional therapies, like HANDLE and Anat Baniel Method. He listened. At least he appeared to listen. When I finished, Adrian asked Dr. DS what our next steps should be, and Dr. DS said, “Medicate Martin. Now is a good time to start experimenting with medications, so that by the time he reaches third grade, when the curriculum becomes more advanced, you will already know the best combination and dosage of medications, whether it’s depressants, stimulants, or something else.”

Thank you, Dr. DS!

Another year passed, and this time we brought Martin to suburban Dr. PS, who opined that autism spectrum disorder is no longer the correct diagnosis for Martin. She said that her testing revealed an upward trajectory from Dr. DS’s reports. While Martin once had significant delays in all four areas of language, Dr. PS said, he now exhibited delay only in pragmatic/social language. “So looking at his history,” she said, “we can see that Martin was not destined to be a child with receptive or expressive language problems, as those have faded away.”

Destiny? I asked myself. Destiny didn’t resolve Martin’s receptive and expressive language delays. Biomed did.

“What should we be thinking about for next year?” Adrian asked.

Three components, said Dr. PS. First, the choice of school setting. Second, additional therapies and resources. And third, medication. It’s time to start experimenting to find the best medication for Martin’s ADHD.

I’m tempted to write, Thank you, Dr. PS! There’s an addendum, however. I told Dr. PS that we are “hesitant” to medicate Martin because doing so would interfere with our biomed protocol. The progress we’ve made, I explained, has resulted from a restricted diet, supplementation, and constant reevaluation of Martin’s health needs. Dr. PS—remember, she’s a mainstream neurodevelopmental psychiatrist—asked pertinent questions, like what kind of doctor we see and whether the protocol is test-based. (There are charlatans in the autism-recovery universe. I know that.) After I provided sufficient reassurance on those points, Dr. PS said we are probably right not to medicate at this time. If what we are doing biomedically is working, she said, then we should exhaust that route. Experimenting with medication does not have a time limit, and it is okay to start later.

So, actually, really, thank you, Dr. PS. Thank you for listening and reconsidering.

And, for my readers, especially my long-term readers, here’s a special tidbit: Do you remember my lengthy post about Mr. and Mrs. Twice-Exceptional, the Quirky Genius School, and the movie The Imitation Game? You might want to revisit that one.

As she was reviewing Martin’s test scores with us, Dr. PS pointed out a wide discrepancy in the different fields. In many academic areas, including reasoning and some language-based tasks, Martin’s scores were at the top of the bell curve, well above the average range. He uses his formidable intellect and those stand-out skills, Dr. PS said, to compensate for his still subpar executive functioning.

“You see,” Dr. PS told us, “your son is what we refer to as ‘twice-exceptional’.”

Easy Peasy, Puddin’ Squeezy

Martin’s school sent home a note to all parents, asking us to make sure our kids keep sneakers in the classroom, to wear to the gymnasium.

I, of course, could not remember whether Martin has sneakers at school.

So I asked him.

And he answered, with a nod.

“You do?” I asked. “Which ones?”

“The blue ones with the yellow swoosh,” he replied.

“Those old ones? Do they still fit?”

“They fit. I tie them myself.”

I used the italics, above, for the benefit of those readers outside the autism community. The others, like parents with a child on the spectrum, know the import of asking my child a question, expecting an answer, and still more, expecting an accurate answer. Once upon a time (for example, last year or any other time in memory), finding out whether Martin had sneakers at school would have required writing a note to his teachers and awaiting their response. Being able to ask him—that’s way more convenient.

Last Saturday, while Adrian was out of town skiing, Martin “took me out” to lunch. We had just settled into our seats when Martin said he had to go to the bathroom. “All right,” I said, “go ahead.” He left the table. He returned five minutes later, his hands still damp from being washed. As far as I can tell, nothing eventful happened between our table and the restroom. Later, I left the table for a minute. I asked Martin to stay put, and gave him my iPhone to amuse himself. He stayed put. When I returned, our waiter said casually, “Your son told me you’re going to the trampoline place this afternoon. Have fun!”, as if my son telling the waiter our plans were an everyday occurrence.

In fact, even though Martin was hyperactive and off balance from his Lyme treatment (again!), the whole weekend that Adrian was away ran smoothly. Friday evening Martin and I went to meet his new trombone teacher. Remember how disappointed Martin was when he didn’t receive a trombone for Christmas? Since then, he’s persistently asked to start trombone lessons. Finally I called music schools—most instructors weren’t willing to work with a child younger than 10—until I found a jazzy older fellow who said something like, sure, we’ll just find an alto trombone so your son’s arms aren’t too short to reach every position on the slide. We ended up buying an alto “pBone,” which is a real instrument whose exterior is plastic instead of brass (with a resulting price decrease!). The teacher-student meeting went well, and since then Martin has started his lessons.

Saturday morning Martin and I attended a student production of Cinderella at a local school, then went out to that lunch, and then met another family for a play date at the trampoline center. For dinner I made a cashew-carrot soup, which Martin ate with a spoon, instead of the stainless-steel straw on which he used to rely. Sunday we went to church—Martin participates in Sunday school with the other kids—and then to his hockey lesson. He chose to spend extra time on the ice after his lesson ended.

Once upon a time I dreaded weekends without Adrian; activities with Martin were a chore, but downtime at home resulted in stimming and meltdowns. Last weekend, the Lyme treatment had Martin at his worst. (Things haven’t improved much; stay tuned.) His worst right now is so much more manageable than his best used to be.

I’m thinking right now about parents of neurotypical kids. For sure, they have their own challenges. That being said—holy cow, parenting a child who can answer questions, complete simple tasks alone, and amuse himself for a few minutes now and again feels almost like doing nothing at all.

Parents of neurotypicals: Is it always like this?

I know that we have travails to come, as Martin continues to recover. At some point, he will transition from special education to general education, and we will have to worry about bullying and self-esteem. As he understands more about what his friends and classmates want, peer pressure will become an issue. And we have travails now. Martin’s continued perseveration, though milder than it used to be, perversely annoys me even more. The uneven temperament that comes with the Lyme treatment is bewildering. Parenting Martin will never be laissez-faire, at least not for me.

But, actually, maybe it kind of will be easy. If raising Martin had been like last weekend all along, I might just have more kids. Lots more.

New Year!: We Met One of Adrian’s Colleagues for a Drink

New Year’s Eve, for our après ski, we met one of Adrian’s colleagues at a distillery. This particular colleague, like most, doesn’t know our son has autism, and whereas the colleague has typically developing children in the same age range, he would be able to spot any differences. We didn’t want Martin to “stand out.”

One way Martin still stands out is ordering food. When we are in a restaurant, he likes to order by himself. That’s fine, if we are in a restaurant whose menu we already know. When we are in a new restaurant, I have to ask eight million questions. The hamburger—is that just ground beef, or is the beef mixed with bread crumbs? The sweet potato fries—do they have any breading or coating? What kind of oil are they fried in? What else is fried in that oil? The grilled calamari—could we get that without the garlic butter? And the whole time I’m asking, Martin interrupts, usually to yell what he wants: No, no! I can get the calamari! Can I get the calamari? I don’t want salad! Occasionally he also has a mini-meltdown over what’s available (or not available) for him to eat, in which case I take his hand and lead him outside until he calms down.

So we were glad to arrive twenty minutes before Adrian’s colleague, have a chance to peruse the menu (the colleague suggested the location), and come up with the best option, both nutritionally and in terms of avoiding a meltdown. By the time the colleague joined us, Martin was occupied with my iPhone while happily downing a grass-fed steak and French fries cooked in canola oil.

Wait. Potatoes? Canola oil? Do we allow Martin to eat potatoes and canola oil?

Generally speaking, we do not. Potatoes are an occasional summertime treat, organic and roasted on our outdoor grill. Canola oil almost never works. Most canola oil comes from genetically modified crops, and even non-GMO “Canadian oil” is refined (hexane-processed?), bleached, degummed, deodorized rapeseed oil in which omega-3 fatty acids have been turned into trans fatty acids. Why would I let Martin ingest that?

Well, because we were traveling, and when we travel, and encounter new situations, and have to “perform,” some restrictions loosen. A bit.

Traveling, depending on where we go (for example, I can do more at my parents’ in Texas than I can in a suite in Chicago), alters:

  • Diet, to a modest extent. Martin’s diet is always free of gluten, dairy, soy, corn, and refined sugar. Beyond that, some specifics slip, including the aforementioned potatoes and canola. It can be hard to ensure organic food, or even non-GMO. He might also miss a day or two of broth. We traveled to Utah on a Saturday. He went without bone broth Saturday, Sunday, and Monday. By Monday afternoon I’d got my hands on a marrow bone and simmered a pot of broth.
  • Cookware. Even at home, my cookware isn’t perfect. Stainless steel remains puzzling, in terms of purity, and I’m never sure if my cast iron is seasoned properly or clean. In any event, at home I cook with All-Clad and cast iron, with mostly stainless-steel or wooden utensils. Whenever we travel, we rent accommodations with a kitchen, and unless we are staying long enough to justify a purchase—for example, when we were in Europe for ten days and I bought a fine strainer and a pot, both of which I brought home—I use what comes with the place. That might mean a plastic spatula, or even, egads!, nonstick pans.
  • Detox baths. At home, Martin takes two or three detox baths (two cups Epsom salt and one-half cup baking soda) a week, depending on whether he’s also used the sauna. Epsom salt is heavy to carry, and I don’t always trust other bathtubs. What product was used to cleaned it? Could I rinse it well enough? There is no point in trying to detox Martin in a tub with excessive chemical residue.
  • Exercises. Right now, we don’t have HANDLE exercises to do. Martin does, however, have four short exercises per day for his vision/neuroplasticity. At least, he has four short exercises when we are not on the road.

We do have absolutes, stuff that doesn’t change, regardless of where or when we travel. Martin takes his supplements, always. I’ve handed him pills in rental cars, measured drops at airport gates, mixed powder into restaurant beverages. I also find him fermented foods, daily, wherever we are. Martin no longer takes probiotics, so fermented foods are his probiotics. Plus, it’s easy enough to find sauerkraut or another cultured vegetable these days, if not kombucha.

The last absolutes? Love, and plenty of attention. Martin always gets those.

Facepalm

Last weekend at church, an older woman asked whether I know anything about selective mutism. Actually, she first asked me whether I know anything about “selection mutation.” Getting to the actual inquiry took some clarification.

“Not too much,” I replied. “Some. From what I understand it’s a type of anxiety disorder.”

The woman said her granddaughter, in Maine, has selective mutism, and she worries that her daughter isn’t doing enough to treat the condition. Is it like autism? she asked. Martin is making so much progress. Can selective mutism be treated like we treat Martin’s autism?

I answered, “From what I know, many of the disorders we think of as behavioral or psychological have a health component, at least when there isn’t an obvious other cause like abuse or overwhelming life circumstances.” Actually, I probably didn’t say it that pretty, but I made the point. “So I would guess you might be able treat selective mutism biomedically.”

“I knew it!” the woman said. “I knew there must be a medication she could be taking!”

Completely not what I meant, I said, as kindly as I could, and then explained some of the fundamentals of our biomedical approach: the restricted diet, everything organic and homemade; the supplementation; the antimicrobial herbs; the homeopathy; neuroplasticity and home-based therapies.

Though I kept the discussion as simple as possible, the woman’s attention waned with each word I spoke. There were no follow-up questions.

That’s the way we’re headed, as a society: Isn’t there a pill to remedy this? Isn’t there a shot to prevent that?

Easy fixes.

I’m Going to Need to Explain It Better

Well, this was bound to happen, sooner or later.

Over Thanksgiving, I brought Martin supplements as he was playing in his bedroom. He swallowed them without liquid, as he does for all pills other than Li-Zyme Forte, which he calls his “hard-to-swallow pill.” I don’t usually deliver supplements to Martin’s bedroom; we do them in the kitchen, preferably with meals. On this occasion, with my family visiting for the holiday, I was trying to get a jump on the evening protocol and make dinner a more normalized affair.

Without looking at me, still drawing a picture on his easel, Martin asked, “Why do you give me these pills?”

Ooooo. Okay. I said, “Remember when we talked about your tummy having troubles, and how when your tummy has troubles, it can make it hard to pay attention?”

“Sure.”

“These pills are meant to help your tummy work a little better.”

“Do my friends take pills?”

“I’m not sure about all your friends. Bobby does, and so do Z and Jackson.” Those are friends whose families treat their autism and other challenges biomedically.

“Some of my friends take pills, but not all of my friends?”

“I think that sounds right.”

“Okay,” Martin said. “I’m drawing a picture of the Beatles.”

“I like it,” I said, relieved that he’d changed the topic.

The conversation left me with two take-aways:

  1. Martin is bound to ask the questions again, and probably won’t let me off so easy. I’m going to have to think carefully about how to respond.
  1. One of these days, I’m going to get hit with the bomb. Martin is going to ask, “Do I have autism?” We came close once already. We were out to dinner with friends when Martin, who took especial interest in street signs around the time, asked, “Mommy, what’s a ‘Child With Autism Area’?” I responded that a sign like that means that drivers should be extra careful because a child who lives nearby might not realize how dangerous it is to be in the street. Then Martin asked what autism is. As Andrés and our dinner guests listened in silence, I responded, “Autism is a condition that can make it difficult to pay attention to what’s going on around them, or difficult to talk to other people.” I waited, mildly panicked, for Martin to ask whether he has autism. But he didn’t. He changed the topic. Bomb dodged.

Pulse Admission

“Admit it,” said my friend Kevin, gesturing as if a grand proposition were forthcoming. “Admit that you like listening to The Pulse.” He was referring to SiriusXM Radio’s channel 15, The Pulse, playing “hits from the 2000s and today.”

I hedged. “Well—”

“Admit that when you’re flipping through your favorite channels, your Bridge and 70s on 7 and 80s on 8 and Classic Rewind, you also check to see what’s on The Pulse. Admit that you do it when Martin isn’t even in the car. Admit it!”

Kevin phrased the accusation exactly right. I had no grounds for denial.

“Fine,” I said. “It’s true. I check what’s on The Pulse. I like some of the songs on The Pulse. Leave me alone.”

I was out to dinner with Kevin and his wife, Stacey. We were in Baltimore attending Natural Products Expo East, a tradeshow and conference for organic and natural foods and beverages. Kevin and Stacey also have a son recovering from autism. I was telling them (1) the good news that Martin is finally taking an interest in pop culture, and (2) the bad news that this new interest means he insists on listening to The Pulse in my car, when he used to be perfectly happy with The Bridge, “mellow classic rock and ’70s folk rock.”

Ah, pity the child of older parents. Martin’s cousin Mandy was born two-and-a-half months after he was. Mandy’s mother, my sister, is 14 years younger than I am. When it comes to pop culture, I’m thinking Mandy has it a lot better than poor Martin.

Over the past year, Martin has started noticing what his peers are doing, and wanting to do the same. In the spring, when the weather warmed, I tried sending him to school without a jacket. Despite the sunshine, he insisted on wearing a jacket. Why? “Because my friends are still wearing their jackets to school.” I wrote about when Martin wanted to carry a backpack to the JCC because the kids who came from school without parents had backpacks. Martin has never seen Despicable Me, but he collects toy Minions. He’s never played Angry Birds, but he loves anything with an Angry Bird decoration.

One weekend over the summer, Martin’s classmate Jack stayed at our home. Jack, evidently, was much better versed in current music and television than Martin. Friday afternoon, as we drove from school, Jack started requesting artists and songs. Taylor Swift. Maroon 5. Duran Duran, in time-warp. At a loss, I searched the satellite stations until I found The Pulse. When we arrived home, Jack asked to watch the Disney Channel and knew just which programs he liked. Martin, whose previous television experience ranged from Rangers games to U.S. Open tennis to continuous loops of the BBC’s Pride and Prejudice, eagerly watched Disney Channel too. Monday morning, I drove both boys back to school. From the backseat resounded not one but two voices: “Taylor Swift! We want Taylor Swift!” Since Jack’s sojourn in neustra casa, Martin has become a connoisseur of all things Pulse and Disney Junior.

Which means that I—who previously resided happily ensconced in the 1970s and ’80s—have listened to a lot of Pulse music, too. And fine, I admit it. I have encountered songs I like. Nick Fradiani’s “Beautiful Life.” Imagine Dragons‘ “I Bet My Life.” Andrew McMahon in the Wilderness’s “Cecilia and the Satellite.” I’ve even heard a few lyrics that resound with our autism journey. In “Uma Thurman,” Fall Out Boy’s frontman Patrick Stump sings, “I slept in last night’s clothes and tomorrow’s dreams // But they’re not quite what they seem.” Heck, that’s me. That’s me every day.

I guess that’s part of having a kid: catching up on pop culture. It’s a totally typical thing.

Anyway, I have to go now. Martin is exhausted and grouchy. He was up late last night, because he wanted to watch Andy Grammer on Dancing With the Stars.

We blaze the night
With all we’ve been waiting for
All this time
Reaches such great heights
Gives us just one perfect night
To say oh what a beautiful life

Oh what a beautiful life.

Nick Fradiani

Leave It. Not the Yes Song That I Love. A Different Kind of “Leave It”

I am compelled to write again on the topic of guilt.

I’ve acknowledged before that I feel guilty for my son’s autism. I know I’m not alone. The Thinking Moms’ Revolution ran a post on this topic last year, titled “How I Gave My Son Autism.” That post exposed a reality: Many mothers, when they find out the health conditions that underlie autism and the environmental factors that may trigger them, feel guilty for not knowing more, for not doing more to prevent autism from invading their children’s lives. I am one of those mothers.

I am also tired of defending my right to feel guilty. Here’s a simplified version of a conversation I had this week:

Friend:

“Why don’t you weigh in publicly on some of these debates, like vaccine safety or antibiotic use?”

Me:

“They are tough issues, and I feel like everyone is so polarized and aggressive. I need my strength to recover my son and don’t want to spend it on defending myself.”

Friend:

“You’ve learned a lot, though. Why not share it?”

Me:

“Someday I will, when Martin doesn’t need me as much. Now is not the time. Understand also—all that I know now figures into the guilt that I feel for what I didn’t know when Martin was a baby. It’s painful for me to share that.”

Friend:

“Wait! You know you shouldn’t feel guilty, right? You know it’s not your fault that Martin has autism? Tell me that you know that.”

This issue arises constantly with well-meaning persons who are not biomed parents. They hear that I experience guilt, and they rush to reassure me that I have nothing to feel guilty about.

While I can’t fault anyone for wanting to make me “feel better,” random reassurances that I bear no guilt don’t make me feel better. They upset me. I know things. These things make me feel guilty. I have this feeling. I have a right to feel it. The emotion is mine to resolve (or not) on my own terms.

Biomed parents get it. When I speak with another biomed parent about feelings of guilt, the response is usually something much closer to, “I get that. How are you coping? Want to brainstorm ways to channel that into positive action?”

We don’t get to walk around telling people what emotions they should or shouldn’t feel. I, personally, become uncomfortable when a mother says that her child’s autism is a “gift.” But I don’t respond, “Wait! You know autism isn’t a gift, right? You know you shouldn’t feel like your child is lucky?” I respond, “Tell me more, if you want to.” And then, if she wants to talk, I listen. If she doesn’t, I leave it alone.

The guilt that I feel is not harmful to my relationship with Martin. To the contrary, it prompts me to do my best for him, however I can.

So, please, leave it alone. That’s a good way to help.