Exasperation. For a Change, His, Not Mine

Martin’s gaining independence delights me for my own sake as much as his. When he could finally be trusted not to leave the house alone or endanger himself climbing the outside of the staircase railing, I could finally shower even when he and I were home alone. When he learned to swim, I could let him play on the swingset without constant fear of the pool 10 yards away. And when Martin finally started getting himself into our SUV—climbing into his booster chair, putting his drink into the cup holder, buckling his seatbelt—that meant no more straining my back to lift him aboard, no more standing in rain or snow waiting for him to arrange himself so I could push his seatbelt across, no more bypassing coffee shops that didn’t have a drive-thru because getting him in and out was such a PITA. Now he even precedes me into the garage, so that when I finally come out, coffee in hand, he’s already settled.

Last month Martin and I were twenty minutes into a car trip when, stopped at a red light, I turned around to speak to him and realized his seatbelt wasn’t buckled. “Martin!” I said. “What’s going on with your seatbelt? Why aren’t you buckled?”

“I forgot!” Martin sounded alarmed as he seized the seatbelt and buckled himself. “Oh, I forgot to put in on.”

“Be careful, buddy. We’re about to get on the highway. That would have really dangerous.”

I’m pretty sure that was a one-time occurrence. Still, since then, I’ve taken to confirming before we leave home, or asking once we’re underway, whether he’s wearing his seatbelt. I rarely remember to confirm before we leave home, which means I’m doing a lot of asking once we’re underway. “Martin, are you buckled?” “Yes.” “Martin, are you buckled?” “Yes.”

Monday I got a different answer. “Martin, are you buckled?” “Yaaaaaa-esssss!”

Exasperation! Martin, the king of repetition and perseveration, was exasperated with my question. As a bonus, his exasperated, “Yaaaaaa-esssss!” had a determinately snippy tone, almost like a pre-teen might utter.

That’s not the place I’ve heard exasperation. We’re on an airplane, and Martin just asked me whether he could order an orange juice. I said no, because he had a juice box earlier today at BareBurger. When Martin was younger, his response to that disappointment would have been a meltdown. His more common response, these days, is a burst of nonsense: “I’m never going to have juice again, ever! Throw all of the juice away! Mommy, we’re going to give the juice to another family!” His response just now was one that’s emerged within the last week or so: “Awwwww!”, that whining protest that children use when they feel they’ve been unjustly denied a privilege. I also got an “Awwwww!” when he wasn’t allowed to watch television at breakfast and when he couldn’t watch Wheel of Fortune because I had the Rangers game on.

I’m not sure I’m ready for all this neurotypicality.

How Can You Just Leave Me?

Forever and a day have passed since I last posted a quote. Today I’m thinking about the lyric to which I clung when Martin was first diagnosed:

How can you just leave me standing

Alone in a world that’s so cold?

When you realize your child has autism and might never have a conversation with you, might never again spontaneously acknowledge your presence, it does not matter if you have a supportive co-parent, an extended family, a pastor to call on, friends who step up. None of that matters, because when you call your child’s name and get nothing, nothing, in response, you are standing alone, and the world is a place colder than you ever imagined.

Nor did it matter that “When Doves Cry” is a love song, not a parenting riff. I am grateful to the man who asked, “How can you just leave me standing / Alone in a world that’s so cold?”, because his words explained my own emotions. From alone in a cold world, I plotted Martin’s (and my) return to society, our escape from autism.

Prince lost two children, one to Pfeiffer syndrome and a second to miscarriage. I suppose we’ve surrendered them all to a place that isn’t so cold. In this life, things are much harder than in the afterworld. In this life, you’re on your own.

MARTIN MADE FRIENDS

As an undergraduate I studied journalism. We weren’t allowed to use quotes in headlines; the rule was, “When the Pope says, ‘F**k,’ you can quote it in a headline.”

There must be some similar rule for all-capital blog headers. You come to my blog expecting a certain consistency: photos that conceal Martin’s identity, headers in initial-capitals only, maybe some italics but nothing fancy. If I start getting all wacky—curly q’s or design changes, exclamation points, politics, profanity, bold, all-caps—I risk the impression of level-headedness I try to maintain, right? Finding My Kid relies on words and the power of Martin’s journey, not typographic tricks.

Except today. I don’t have words big enough to express what Martin has done, so—

Welcome to the first time Finding My Kid is shouting a header at you:

MARTIN MADE FRIENDS.

We’ve lived in our suburban house for almost three years. The yards in our enclave are large, so although we have neighbors, they are not bumped up against us. We know the neighbors, as in, we know who they are. The teenager next door babysits for Martin. We wave at the others, chat occasionally in the street. (You caught us: Adrian and I are hardly social butterflies.) Martin, however, has never shown any particular interest in children who live around our dead end.

What I’m about to relay is second-hand, as told to me by Martin’s nanny, Samara. I can attest that Samara is guileless in her storytelling, a real just-the-facts-ma’am operative. I work in the City Wednesdays and Thursday, so Martin is with Samara. Last Wednesday, by her account, Martin asked to ride his bicycle after school. She agreed and told him to stay close to the house. Instead, he announced that he was riding to the neighbors’ house. Samara, who could hear the neighbors’ six-year-old twin girls (Martin is seven) playing in their yard, asked Martin to wait. Instead, he looked directly and mischievously at her, smiled, and raced across the street to the neighbors’ driveway. By the time Samara caught up, Martin was talking to the girls. He’d met these twins once before, when we participated in a volunteer project at their home. He did not manage, that time, to speak with them.

Samara checked with the twins’ babysitter, who said it was fine for Martin to play in their yard. Samara then returned to our house, within eyesight, to start making dinner. After ten minutes or so, she realized that Martin had disappeared into the girls’ house. She waited a while and then walked back across the street. The girls had other friends over, pre-arranged, and while one sister was playing with them, the other sister was playing with Martin. He stayed another 45 minutes or so. When he returned home, he was proudly carrying a knotted keychain the twin had made for him.

Thursday after school, Martin got off the school bus and asked to ride his bicycle. He rode directly to the neighbors’ house, and upon seeing Martin in their driveway, the twins came out to greet him. Samara again checked with the twins’ babysitter, who again gave permission for Martin to stay and play. The three kids ran around together in the yard for 30 or 40 minutes, until the girls had to go inside to work on their homework. Martin rode back home. To Samara’s surprise, after half an hour, the twins (homework apparently finished) arrived with their babysitter and asked to play some more with Martin.

Meanwhile, from my office in the City, unaware of these Thursday activities, I emailed the girls’ mother to thank her for hosting Martin Wednesday afternoon. She emailed back to say Martin had been a pleasure, that she was thrilled the kids were playing together, and that her daughters were at my house at that very moment.

According to Samara, the girls left our house around dinnertime, and asked if they could return on Friday. Martin has trombone lessons and a social-skills play group on Friday afternoons, so that wasn’t possible; Samara plans to arrange a visit this week instead.

Friday morning, Martin told me he was taking the knotted keychain to school. He wanted to show it to his classmates and tell them about his new friends.

When Martin was still acquiring language, sometimes he would use a phrase or idiom correctly, one time, and then those words would disappear, only to reemerge later with consistency; for example, he once answered a question with “I don’t know” but didn’t say “I don’t know” without prompting again for months.

On Sunday, four days after Martin made his twin friends, his class had a play date. Half a dozen boys showed up to run around a playground. Martin joined their chasing and pushing for a few minutes, then chose to climb by himself. I think he still gets overwhelmed in a crowd, even a small crowd of his own classmates. Later the same afternoon, back home, Martin saw a girl his age, a stranger, riding her bicycle in the street. Immediately, he asked to go ride his bicycle. Adrian, who went outside to supervise, reports that Martin was clearly interested in the girl but couldn’t bring himself to speak to her; even when Adrian and the girl’s father tried to introduce the two of them, Martin hung his head and looked away.

Martin has friends, arranged by me, with whom he plays regularly. Meeting the twins across the street, by contrast, marks the first time Martin has made friends. Based on the experiences Sunday afternoon, I would say that making friends is like saying “I don’t know” once was: Martin showed that he has the skill, and now the skill will disappear for a while before reemerging with consistency.

He just needs to gain some confidence and remember to use the skill he evidently now has.

MARTIN MADE FRIENDS.

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This picture is not (completely) related to this post. But I am so excited that our cherry blossoms are starting to pop, and since we walk by this tree on our way to our neighbors’ house, I’m using that as an excuse to include the picture.

Compromised

Sunday’s Weekend Edition had an interview with Arianna Huffington about her new book, The Sleep Revolution: Transforming Your Life, One Night at a Time, which reminded me of a post I’ve been meaning to write about sleep.

Or as it were, sleeplessness.

Martin’s early autism was marked by profound inability to sleep. He took an hour or more (sometimes up to three hours) to fall asleep and managed only a few hours before waking again for long stretches, like from 1:00-5:00 am, and then, maybe, sleeping another couple hours. When Martin was awake, I was awake: He yelled and cried, climbed out of crib or bed, and usually needed physical restraint to rest, or for any hope of returning to sleep. (A weighted blanket made no difference.) For more than a year, I survived on as little as two hours’ sleep per night, and considered six hours a luxury. When I did sleep, it was often on Martin’s bedroom floor, or contorted around his body in a single bed, or upright in the chair next to him. I drafted a celebratory post when I could finally lie in my bed even though he was awake, and again the night that I lay awake in bed because I finally wasn’t exhausted.

I’ve said this before, and I believe I will say it many times again: Sleeplessness makes autism so much the worse. Autism is emotional turmoil. Adrian and I have had to fight the system to seek recovery for Martin. I endure constant guilt about whether my own actions contributed to Martin’s condition. I’ve given up on having a second child, and at times I questioned whether my only child would ever live independently. All of that notwithstanding, the single greatest challenge of Martin’s autism, for me, has been sleeplessness. I understand why sleep deprivation is considered a form of torture. When you’ve had only 20 hours’ sleep over an entire week, nothing makes sense. During the most challenging, jittery months, I had to avoid sitting down during the day, because I might fall asleep, wherever I was.

Even when Martin became a better sleeper, I regret to report, I continued to squeak by with too little rest, juggling writing, autism recovery, the bad nights Martin still sometimes had, and as close to a healthy a marriage as I could muster.

Now, three or four years after the Great Sleeplessness, I make an effort to get at least seven hours’ sleep every night, and eight full hours as often as possible. I’m doing pretty well. But I know that my health still shows the effects of having gone so long without sufficient rest. Before Martin developed autism, I caught two colds a year, one in the winter and one in the summer, and other than that rarely was sick. Since the Great Sleeplessness, I’ve endured as many as four major illnesses per year, despite eating a cleaner diet than ever. Nowadays when I feel “something coming on,” I can’t assume that if I take it easy for a few days and lay off the gym, I’ll be fine. “Something coming on” now means that I’m going to be effectively non-functioning. That’s what happened a few months ago, in January: On a Saturday afternoon, I felt vaguely unwell. By midday Sunday, I was coughing uncontrollably. I had to cancel a Monday afternoon flight to California and ask my law partner to cover the mediation I had been scheduled to attend; from Monday afternoon, when Samara arrived (thank goodness, she had been scheduled to come and care for Martin while I was in California) until Thursday, when Samara went home, I stayed in bed. After that, I was able to rise and get through the day, but I remained out of sorts, with a persistent dry cough, more than a week later—at which time a chest x-ray showed I didn’t have pneumonia, and the doctor asked me to please, please consider antibiotics. I suppose I’ve become too reluctant to use pharmaceuticals.

When I was 21 and living in India, I caught dysentery and quickly dropped from 110 pounds (those were the days) to 95 pounds (bad idea!). I’m 5’6″, and it took months for my weight to cross back into triple digits. I also started feeling cold, almost all the time. I wore extra sweaters and slept under piles of quilts. As I recollect, the cold feeling, which was ignited by being underweight, stuck with me four or five years before fading. I’m hoping for something similar now. Constant exhaustion weakened my immune system. Four or five years of taking care of myself—fingers crossed!—should just about alleviate the issue. Check back with me in 2018.

For now, I am done with sleeplessness. I hate sleeplessness. I hate sleeplessness all the more for these points:

  1. Chronic fatigue has imposed a heavy burden on my well-being. If this is what happened to my body, what did sleeplessness do to Martin, who was a growing toddler? Moments like these, I am so very thankful to understand that autism is medical, and to have found biomed as a way to restore Martin’s health, and mine.
  1. For children and adults on the spectrum whose symptoms are more severe than Martin’s, or whose health doesn’t improve with interventions, this kind of sleeplessness may persist for years. Years. And the same can be said for their parents/care-givers. Years. Remember the study that found that mothers of children on the spectrum can suffer damage comparable to combat stress? I think I know a big reason why that happens.

Oh, dear. I feel something coming on again, and this time it’s snark:

Tell me again why “autism is an important part of neurodiversity” and we “shouldn’t be trying to cure autism”?

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.

Tuesday Morning

Weekdays, this year, I get up by 5:40 am, which prompts many friends to ask, Why? (On the other hand, my father, who grew up on a farm, starts sending me text messages by 4:15 am, often concluding an hour later with, “Are you even up yet?”) Here is exactly what I did Tuesday morning, last week.

5:34 am. Got up, pulled a sweater over my pajamas, and headed for the kitchen. I set my alarm for 6:00 am. In practice, almost invariably, I wake by 5:40 am.

5:38 am. Turned on kitchen radio, which is set to WNYC. Opened a bottle of kombucha from the refrigerator, powered up my iPhone to check for messages and emails. Responded to three emails. Found no texts from my father. Emptied the dishwasher and loaded a few bowls that hadn’t fit last night, because I can’t stand to start the morning in a disorderly kitchen. Drank kombucha.

5:50 am. Set a kettle of water to boil, made coffee, and heated vegetable broth. Making coffee, in the morning, consists of adding water to the coffee maker, since the beans are already in the coffee maker; I will leave beans in overnight, but not water. The vegetable broth is for me.

5:55 am. Drank kombucha. Once the kettle whistled, poured boiling water into two insulated food containers, one for Adrian’s lentils and one for Martin’s sausages. The boiling water preheats the food containers, so that the contents stay hot longer. Attempted to listen to the 6:00 am headlines. (An EgyptAir plane was hijacked and redirected to Cyprus!) Assembled Adrian’s lunch sack from the items I prepared last night: two fruit snacks (sliced apples and sliced bananas), two protein snacks (today, organic peanuts and Greek yogurt), and sandwich (on gluten-free, sprouted-grain bread, natch), all piled on an ice block. Stirred MCT oil into my broth and drank the concoction. Heated Adrian’s lentils (he gets homemade, when I’ve made lentils; today, he got Amy’s from a can), emptied the boiled water from his food container, and replaced it with lentils. Adrian’s lunch was ready: sandwich, fruit, yogurt, peanuts, and lentils. Am I a neurotic control freak for making my husband’s daytime food, when he works in Midtown Manhattan and, within a five-block radius, could purchase any cuisine known to mankind? Don’t answer. That question was rhetorical. Drank coffee.

6:10 am. Heated the sausages for Martin’s lunch. I try to give Martin no more than one (and sometimes no) serving of animal protein per day, not counting bone broth. Usually I send the meat course for school lunch: mini-hamburgers with hidden veggies, sausages, calamari, scallops, that sort of stuff. Drank kombucha. While the sausages were heating in a cast-iron pan, finished prepping the morning juice. I washed and peeled the carrots, ginger, and turmeric last night, and also washed the apples, but the apples still needed to be sliced and cored. Emptied the boiled water from Martin’s insulated food container, and loaded in the sausages. Drank coffee.

6:20 am. Prepared Martin’s snacks: sunflower-seed butter on quinoa-rice crackers, quartered, and chocolate avocado pudding. His school is nut-free, and 90% of what he likes for snacks contains nuts, so I have to be creative. The chocolate avocado pudding I make by combining ripe avocado, cocoa powder, Manuka honey, vanilla, and sea salt with an immersion blender. I could make pudding the night before, but I think it tastes best when fresh, and also I add a packet of MitoSpectra powder, which I would not want to do too far in advance. Drank coffee. Finished kombucha.

6:30 am. Began preheating the oven. Dripped 20 drops of MC-Bar 2 (to combat Lyme disease) into an empty gelcap and grabbed two Candex capsules. Because the protocol provided by Martin’s doctor says Candex and MC-Bar 2 should be administered 30 minutes before breakfast, snuck to Martin’s bedroom, whispered, “Martin! Martin! Pill! Pill!” and inserted each pill into his mouth, in succession. Martin swallows capsules with no liquid and can do so without even waking up. This has taken years of training. Checked to see whether Adrian was awake. Usually, Adrian gets up by 6:00 am and leaves the house around 6:45 am to catch his train to Manhattan. Tuesdays, I work in my tiny law firm’s office in the city, so Adrian stays home until 8:00 am, and then we drive together in his car to the train. I leave my car at home, for Martin’s babysitter to use. Saw that Adrian was awake. Kissed him good morning.

6:38 am. Started breakfasts. Dropped a slice of gluten-free, sprouted-grain bread into the toaster, for Adrian. Diced orange and red bell peppers (washed the night before), onion, and garlic cloves (peeled earlier), then started frying the veggies in olive oil (in the same trustworthy cast-iron pan that handled the sausages). Placed two chocolate-quinoa muffins, baked in advance in large batches, then frozen and defrosted as necessary, into the oven to heat. Spread peanut butter on Adrian’s toast and plated the toast on the kitchen table. Began dropping the prepped carrots, ginger, turmeric, and apples into the juicer. Ground salt and spices onto the vegetables in the frying pan. Welcomed Adrian, who was sleepy, into the kitchen. Drank coffee.

6:52 am. Crunch time! Cracked an egg into the frying peppers, onion, and garlic, and flipped those ingredients into a little breakfast entrée. Stirred the fresh carrot-ginger-turmeric-apple juice, divided it into three portions, and mixed Vitality C into Martin’s glass. Placed Martin’s juice by his spot at the kitchen table, and Adrian’s juice next to his toast. Dumped the rest into a glass for myself. Thought about pouring Adrian some coffee but decided he can get his own coffee. Prepared a plate for Martin, with the veggie-egg and two chocolate-quinoa muffins. Photographed Martin’s breakfast, for this blog. Also poured Martin a tumbler of kombucha. Started drinking my juice. Attempted to listen to 7:00 am headlines. (The EgyptAir hijacking was allegedly the work of a disgruntled husband, not terrorism.) Swigged coffee.

7:02 am. Only two minutes late, and with two more capsules in hand, headed to Martin’s bedroom to wake him. Rubbed his back. Gave him the capsules to swallow. Coaxed him. Cajoled him. Said he could ride on my back to the bathroom, but the offer was good only for five seconds. Counted, slowly, aloud, to five. Between four and five, he climbed aboard. Stood, with 63 pounds of Martin on my back, and walked to the bathroom. Deposited him on the toilet. Returned to the kitchen to fetch two more capsules. Found Martin trying to sleep on the toilet. Fed him the capsules, helped him wash hands. Escorted him to the kitchen, seated him at the table. Rebuffed suggestion that he be allowed to watch television while eating. Fed him first bite of veggie-egg to remind him that he likes the dish.

7:15 am. Gave Martin assorted supplements, antimicrobials, and such. Reminded Martin that he could watch Disney Junior while he drank his carrot-ginger-turmeric-apple juice, after he finished his egg and muffins. Sort of woke him up. Begged him to finish his egg and muffin. Measured all his morning drops onto a spoon and gave him that. Administered two teaspoons Morningstar Minerals from the same spoon. Finished my own carrot-ginger-turmeric-apple juice. Drank more coffee. Reminded Martin that Mickey’s Clubhouse starts at 7:30 am, encouraged him to finish food by then. Martin loves Mickey’s Clubhouse. It’s really directed toward pre-schoolers, but he’s discovered it only this year. Attempted grown-up conversation with Adrian, as he ate peanut-butter toast and drank his coffee. Chosen topic: EgyptAir hijacking. Watched Adrian wander away to shower.

7:30 am. Finished administering Martin’s morning supplements, antimicrobials, and such. Removed his plate and congratulated him on finishing the food in time to watch Mickey’s Clubhouse. Reminded him that with the privilege of watching Mickey’s Clubhouse comes the responsibility of finishing his juice. Wrote in Martin’s school notebook, telling his teachers he will take the bus home today. Some Tuesdays I pick him up. Put the sausages and snacks into Martin’s lunch bag. Filled his LifeFactory bottle with seltzer water and a splash of grape juice. Packed his backpack with the lunch bag, the drink, his homework folder, his teacher-communication notebooks, and a pair of gloves, in case the outdoor playground was cold. Martin carries a boxy German backpack, because Adrian attended German schools and always wished he had a genuine boxy German backpack. Don’t ask. Finished my carrot-ginger-turmeric-apple juice and encouraged Martin to finish his.

7:40 am. Eight minutes for me! Leaving Martin in the kitchen to finish his juice, returned to our bedroom to wash my face, fix my hair, brush my teeth, and get dressed. When I’m working in my office, I shower and wash and blow-dry my hair the night before. I also save morning time by doing my make-up in the commuter train, instead of at home. Gauche, I know.

7:48 am. “Me” time is over! Returned to the kitchen, with Martin’s school uniform and a tub of shea butter. Encouraged Martin to finish his juice by saying, “Big sip! Big sip!” Rubbed shea butter into his itchy spots. Martin still detoxes and sheds a lot through his skin, which makes him itchy. Let him get dressed in the kitchen so he wouldn’t miss the end of Mickey’s Clubhouse, because who’s got time for that kind of fight? Focused him on each article of clothing as he attempted to do a simultaneous Hot Dog Dance. Ran for toothbrush so he could his teeth by the kitchen sink. Turned off the television. Handed him coat and hat.

7:56 am. As Martin waited for the bus, threw my laptop, papers, iPhone, keys, wallet, and make-up case into by work bag. Put on my shoes and coat. Poured another cup of coffee, this time into a paper cup with a lid.

7:59 am. Watched Martin board the school bus. Because Martin receives special-education services, the bus picks him up at the end of our driveway. Climbed into Adrian’s car, which he had already pulled out of the garage. Zoomed toward the train station.

Kudos to you, if you perused this entire, overlong enumeration of Tuesday morning’s tasks. I wrote it with a point in mind. Bet you couldn’t tell I had a point, could you? Don’t answer that. It was rhetorical again. By nature, I am neither organized nor punctual. Pre-Martin, pre-Adrian, for everything but court appearances and work meetings, I ran 20 minutes late. Some of my friends even had a term for the phenomenon: “Maria time.” They confessed to telling me dinner reservations were at 7:30 when really they were at 8:00, so that Maria time would closer coincide with standard time. Activities that required planning, moreover, were disastrous. I had no one to look after but myself and my cats, and yet I never seemed able to get to bed before midnight, or out the door to work before 9:00 am.

For a couple years, I have known, peripherally, a mother with two sons: Stevie, who has severe behavior challenges, and Sasha. One evening, I ran into this mother at a local pub. She said she’s seen Martin recently and noticed how well he was doing. We got to talking about what we do for Martin—diet, supplements, protocols, therapies—and the following exchange ensued:

Her:     “That’s terrific. I recovered my son too! It was so easy!”

Me:      “‘Easy’ isn’t the word I would pick first. It feels really challenging, all that recovery requires.”

Her:     “For us, we just changed his diet to gluten- and dairy-free and gave him B12. That was it.”

Me:      “Wow, that is amazing! I didn’t even realize Sasha had autism. Congratulations!”

Her:     “Not Sasha. Stevie! Stevie is recovered.”

I spent the first 30 seconds of this exchange inspired and intrigued. Autism recovery, easy? GFCF diet plus B12 equals neurotypicality? Perhaps, I thought, I am overdoing everything, and Martin’s health could improve with less effort. Far less. But then the other mother said she meant Stevie, not Sasha, and my perspective changed. I know Stevie. I don’t know where his journey started, behavior-wise, but I know where he stands today, and I would not consider him “typical”; his hyperactivity gets him into trouble, he needs extra help to participate in group activities, and he frequently isolates himself, scowling. If that’s easy recovery, I thought, I will stick to the difficult version.

But really, how difficult is it, now? The earliest days of recovering Martin were overwhelming: planning meals days in advance, understanding immune function and neuro-signals, exploring new treatments, coordinating doctor visits, breaks for crying, and all on only a few hours’ sleep per night, because Martin couldn’t sleep. Pardon the expression, but—it sucked.

The Tuesday morning described above was not so bad. The portions of the breakfasts, lunches, and snacks that could be prepared in advance were prepared in advance. Martin’s homework was complete, tucked into his school folder. I woke after more than seven hours’ sleep, and with my hair washed and dried the night before. As I gave Martin his supplements and antimicrobials and homeopathic remedies, I checked boxes on a weekly schedule that I prepare each Sunday. Though I had a lot to do, it all happened with minimal panic or frustration. It felt like I imagine standard parenting feels.

Martin’s lack of planning skills and executive function have finally forced me to hone my own planning skills. Not every morning runs smoothly, and much in my life remains unaccomplished. (More frequent blogging and publishing are pretty good examples, and I will never understand the science of autism recovery as well as I wish.) You’ll never hear from me, “I recovered my son! It was so easy!”

Still, one day, maybe you’ll hear this: “I recovered my son! It wasn’t so bad, and it helped me get my own life in better order!”

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