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.


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!”


We’re vacationing in the paradisiacal Florida Keys, these land slivers with Atlantic to the east and Gulf to the west. I’m writing on our villa’s back deck, just before dawn. My feet are up, and just beyond my toes lie a narrow boardwalk and harbor access. I can barely discern the shadows of a dozen boats docked nearby, and only by the occasional honk of waterfowl breaks the crepuscular still.

Perfect, right?

No. So far, four days in, it hasn’t been much of a vacation for me or for Martin. Just like on Christmas day, he’s been sick, sick, sick. Last Friday, the day after Christmas, he remained sick but appeared to be on the mend. Friday night wasn’t great; the coughing and runny nose kept him up. Saturday morning, though, he sprang from bed and danced about, singing that we were going to Florida, and so we decided that he was well enough to get on the airplane. Indeed, Saturday ran smoothly. The biggest challenge came when we stopped at a friend’s house in Miami. Adrian’s father and niece and nephew, who are joining us on this trip, were already at the friend’s house, swimming. Martin had a monumental meltdown when Adrian said he couldn’t swim.

Saturday night Martin fell asleep with one of his cousins. Before midnight I carried him from that bed because his coughing and fretting were keeping her awake. Martin spent the rest of the night in my and Adrian’s bed, his coughing and fretting keeping us awake. Sunday, Martin participated in vacation activities listlessly until finally, before dinner, he fell asleep on the sofa and we moved him back to my and Adrian’s bed. Monday, Adrian took his father and niece and nephew to Key West. Although I love Key West, I stayed behind with Martin and spent the day coordinating. I spoke repeatedly with his pediatrician and his MAPS doctor back home, communicated on-line with his homeopath, did some research of my own, found a pediatrician here to visit, went to a pharmacy for prescription medication, went to a health-food store for holistic remedies, returned to the pharmacy for a different prescription, and all the while pampered Martin.

The verdict? Martin has a bad cold and middle-ear infections on both side. His chest, thank goodness, is clear.

Last night, Tuesday night, Martin slept through the night, albeit tossing about. I was not so lucky. In the course of nursing Martin, I picked up his bad cold, and despite multiple doses of “nighttime” cold syrup, I spent the night awake, clearing my nose. Around 5:30 am, worried that I would wake Adrian and Martin (who is still bedding with us), I gave up and came out here to write.

What this whole saga stirs in me is the thought of how non-traditional my parenting experience has been. Readers who’ve been with this blog a long time know that Martin didn’t used to get sick. From age one until age three-and-a-half, there was virtually no illness. No stuffy noses. No stomach bugs. No ear aches. No fevers. When he finally did get a fever, eight months or so after we started biomed, we weren’t even sure what to do.

Times are changing. If I’m remembering correctly, this is the fourth time Martin’s been sick, and the second ear infection he’s had, in 2014. The first time he had an ear infection—“Any idea why my son might be waking with his hand over his ear and howling?” I asked an on-line parenting forum (duh!)—Adrian said, “Poor little guy. I used to get ear infections all the time. They’re so painful.” That’s right. Young kids get ear infections. They get stuffy noses. They need fevers. Their illnesses are supposed to disrupt plans, even vacations, from time to time, right? That’s how an immune system develops. Martin’s inability, all that time, to mount an immune response, was atypical.

My only child has an autism spectrum disorder. So many facets of traditional American parenting don’t apply to me. Martin doesn’t attend the local school, or the local day camp. He doesn’t play on the soccer team, or beg to go to Chuck E. Cheese’s, or want a video-game console for Christmas. He doesn’t eat French fries or junk food. He doesn’t, or didn’t, even get sick. Sometimes I find few points of connection between me and parents of NT six-year-olds, and even as Martin becomes more typical, there are facets of childhood we have lost irretrievably.

Perhaps the flipside is joy in unexpected places. How many parents can be happy when a fever gets in the way of vacation? Or when their kids act naturally bratty? Our culture is built upon the drive for exceptionalism. I’ve spent my life trying to be exceptional. Having an exceptional parenting journey thrust upon me has done a lot to temper that drive. Today, in many ways, I’m fighting for an unexceptional life.

Strange, this path.

To Martin, on Christmas

Martin, my love, my bunny rabbit, happy Christmas.

It’s been nearly four years since we began biomedical interventions to help you regain your health. If you read this one day, I thought you might like to know how Christmas 2014 looked.

This was the first season that you took an interest in Santa. Daddy and I have never done much to talk up Santa at home, so I’m not sure where you caught the faith. But you did. Since mid-December you’ve implored me to text Santa your holiday wishes, continuously, as they sprang from your head. I had to change Daddy’s contact information in my iPhone to “Santa Claus,” because with each outgoing text you inspected the screen to confirm that Santa would receive the message:

Santa Claus, Martin wants me to tell you that he did very well and played games today.

He would like you to bring him a Knuffle Bunny for Christmas.

Santa, Martin would also like Rudolph.

And a golf club and a golf ball.

And a calendar for January.

Santa, Martin finished all his soup!

I may never erase those text messages.

You approved the idea of lighting a fire to warm up the chimney for Santa, and you agreed that we should leave him a snack. I have to apologize: I forgot to leave a snack last night. This morning, when I saw you headed toward the family room, I grabbed a clean plate and a couple orange rinds from the counter, beat you to the fireplace, and claimed they were evidence of a snack consumed by Santa. Forgive me that! Know that I tried to hum your Santa vibe 100%, until you asked, “Will Santa come into my bedroom and give me kisses?” That was creepy.

You received pretty standard kid-presents. A lot of books. That Knuffle Bunny you asked for, along with a stuffed Paddington. A solar-system wall chart for your bedroom. Daddy bought you a fancy sweater; he’s that way. A family friend gave you a telescope! We can’t wait to assemble that.

I was a disappointed that you didn’t show much enthusiasm opening presents, or for the Rudolf-the-red-nosed-reindeer breakfast I made you. That being said, it didn’t take long to track the pathology of your indifference. Halfway through breakfast, you asked to “take a break” on the couch. Soon after that, you developed a fever, and snot streamed over your mouth and chin. You were sick, sick, sick. You are sick, sick, sick, with a fever and everything. That might not excite all parents. For us, remember that we passed years wherein your body never managed the healing reaction of a fever. In 2014 we’ve welcomed three or four fevers.

Our friend Edwina came for Christmas supper. I made everyone’s meal GAPS-compatible (with the addition of quinoa): deviled eggs and peanuts as hors d’oeuvres, then quinoa-vegetable stuffing, kale salad with cranberries and homemade dressing, salmon, mashed cauliflower, hazelnut-zucchini bread, and chocolate-avocado pudding, berries, chocolate chunks, and my own meringue cookies for dessert. A fat lot of good all that effort did: You weren’t well enough even to come to the table, let alone eat. At least Daddy and Edwina enjoyed the food.

The feast we had without you.

The feast we had without you.

We used “FaceTime” to talk with your family in South America and across the United States. Your sickly participation, though lethargic, was good-natured. Throughout the day I texted your U.S. grandparents and your uncles bulletins on your condition. I was worried that, having slept so much of the afternoon on the couch, you might not be able to fall asleep tonight. Your Uncle Rudy, from California, told the whole family that he was sure you would fall asleep fine. It’s nearly midnight now, and you’re still awake. Plainly, your Uncle Rudy is not a reliable predictor of these things.

You were supposed to go to the local Jewish Community Center tomorrow (Friday), for an all-day social program. That would have given me a lot of time to prepare to leave 7:00 am Saturday for Florida. Unless you make a miraculous recovery over the next eight hours, I’ll keep you home tomorrow; Saturday morning—please may you feel better by then—we’ll embark less than ready. Don’t feel bad. It’s not the first time I’ve scrambled to get it together for vacation. It won’t be the last.

Martin, my love, my bunny rabbit, may you cherish these days. Happy Christmas.

The breakfast I made you yesterday. You complained about eating eggs.

The breakfast I made you this morning. By then you weren't hungry because you were getting sick.

The breakfast I made you this morning. By then you weren’t hungry because you were getting sick.

From Crappy to Happy

Remember the post about really crappy days?

Today is a really crappy day!

Stick with me, though. This isn’t going to be an unhappy post. I’ve been doing too much frustration posting lately, like when I used to do too much middle-of-the-night posting. It’s just not healthy. So today, in this post, I’m going to write myself back to happy.

First: the background. A couple weeks ago, Martin wasn’t himself. If you read this blog regularly, you know that. Here’s an excerpt of an email I sent Martin’s biomed doctor March 13:

Most nights he’s taking two hours or more to fall asleep, and waking two or three times between midnight and 5:00 a.m. He is tired all the time. He’s also “floppy” again. He is extremely hyperactive; charcoal tablets, salt/baking soda baths, and clay baths haven’t helped. His teachers have been telling me that he’s inattentive in class and not responding to his name. He had a pee accident at school this week. Sunday afternoon he had a meltdown so severe that my husband was unable to get him out of the car.

We’ve been on nystatin two weeks, and the yeast hasn’t responded, as far as I can tell. Martin remains itchy.

In general, I have an unhappy kid right now, and I feel horrible about it. Obviously, we need to make changes.

Things have got better since I sent that email. I took Martin off nystatin, switched him to full GAPS diet (more on that in a later post), and on the advice of his homeopath, increased some of his “support” drops (Inflamma-Tone and Liver-Tone, among others). He took a turn for the better, in terms of increased awareness, and some reduction in time to fall asleep, and less itchiness.

This past Tuesday afternoon, he got sick. The school nurse called me to retrieve him, and I ended up having to keep him home the rest of the week. If you’re wondering why I haven’t posted much this week, try being housebound with Martin. While sick, Martin had good language and connection, but he slept poorly and was crabby.

Second: this day. Adrian’s alarm woke us at 7:00. Adrian and I got home last night at 11:00 pm from the City. I had to feed the cats and strain Martin’s chicken broth, so it was 12:15 am when I got to bed and 12:40 when I got to sleep. Martin woke three times between then and 7:00 am. He was never up long. Still, each time I had to get up, tuck him back in, and then get myself back to sleep. Figuring 30 minutes for those diversions, I got just under six hours’ sleep, interrupted. This was after a week when I was exhausted from his night waking and unable to nap because he was home with me.

Martin was still sleeping at 7:00 am. I would have preferred to get at least 30-to-45 more minutes myself. Not possible: Adrian had scheduled an early gym visit, because his trainer had something else to do later today. So up we were. I had Adrian fed and out the door before Martin left his bed.

I tried to convince Martin to dress himself. He did, eventually, but required 15 minutes of crying and whining to reach that point, and even then didn’t make it to the socks. He declared breakfast—chicken broth, salmon sausage, and a bit of banana—to be “all things I like!” Still, he dawdled. We ended up rushing to get out the door for his 10:00 am special-ed reading program at the public library. Amidst the hurry, Martin had a meltdown because it was too warm to wear his heavy knit “dog” hat.

We drove to the library. Martin had another meltdown because I said, as I do whenever Curious George comes along, that Curious George had to wait in the car. I delivered Martin, still teary-eyed, to the reading program. Then I walked to FedEx to ship my kid’s stool samples to a lab (biomed parents know that ritual) and proceeded to a coffee shop, where I sat alone, missing the easy camaraderie of the parents from Martin’s old Saturday-morning playgroup in the City.

When I returned to retrieve Martin, he had a meltdown because I hadn’t brought Curious George into the library with me. I suggested that we go to the car, where Curious George was waiting. Martin screamed. In the library. My suggestion, it turns out, was wholly unacceptable because Martin wanted Curious George to “play with him” in the library.

By the time we got home, I could feel myself coming down with whatever’s had Martin sick this week. I told Adrian I needed to lie down for 20 minutes. I climbed in bed and shut my eyes. Within five minutes I opened them again. Martin was running around the house yelling, “Mommy! Mommmm-eeeeee!” I could hear Adrian in his home office, on a call. Not wanting his call disturbed, I said, “Martin, I’m in the bedroom.” Martin ran into the bedroom and jumped on me. I got up. I took ibuprofen for my head, which ached.

For lunch I prepared raw carrots and broccoli florets with avocado-and-fermented-garlic dip. I called Adrian from his home office to come eat with Martin. Because the meal, which I named “dippin’ plate,” was new, I wanted Martin to see that Adrian was eating the same. Martin, however, claimed he needed the potty. He disappeared for 10 minutes, during which Adrian finished his own dippin’ plate and returned to his home office. So much for eating what Daddy is eating.

After I finally got Martin back to the table, he left repeatedly, running to our bedroom, the farthest point in the house, and laughing. It may go without saying that we ended up in a rush to get to his afternoon social program at the JCC, and that I left the kitchen a disaster, and that I didn’t get a chance to feed myself much, and that I was feeling worse by the minute.

When Martin and I finally were at the door, ready to leave, Adrian showed up. He asked, “Why do you seem grouchy today?”

On the way to the JCC, Martin peed himself and lied about it.

Which brings us to this moment. I’m in the JCC library, blogging while Martin enjoys his social program.

Third: the happy. Let’s review this day—

Martin took 15 minutes of crying and whining to get dressed. This was partly my fault. I broke routine by asking him to dress himself as soon as he woke, before he even went to the bathroom or ran around. And yet he still got managed the task. As a bonus, when I asked him to pull his arms inside his shirt, he looked down and said, “Oh, it’s on backwards,” and then cooperated fully.

I’m tired from a long week with Martin at home, plus I’m starting to get his illness. Having unexpected sick days is a hassle. The other days, however, Martin gets to attend a fantastic kindergarten. Adrian and I could hardly be more satisfied with Martin’s special-needs school and his academic progress. I make this point because I’ve seen from autism parenting forums how many families need to consider homeschooling because they have no appropriate placement. We are lucky

Speaking of Martin’s (and now my…?) illness, Martin had a fever! It was the second time he’s had a fever since we moved last summer. Fever is good. Fever is healing. Fever indicates that Martin’s immune system is responding appropriately to illness. That’s progress.

Martin had repeated meltdowns today. There’s a pretty good explanation: He too is tired, and not feeling so hot. (Lest you think I’m dragging a sick kid around town, it was Martin who insisted that he felt better and could go to the library this morning.) Plus, the meltdowns didn’t last long. When he wanted the dog hat, we talked, and he agreed to get Curious George instead. When he screamed in the library, I asked, “Remember last week when you screamed at church and we had to leave?” He took the hint and calmed himself down in exchange for extra playtime at the library. I offered five minutes playtime. He bargained me up to seven minutes. That works.

Martin didn’t eat with Adrian, and then ran away from the table. Each time, I kept my cool. I went to the bedroom where he’d run, took his upper arm, and walked him back to the table without a word. After a couple tries and not getting the attention he wanted, Martin settled down. In the end, he ate the dippin’ plate. The GAPS diet isn’t easy, especially when it comes to packing for school. If Martin accepts a dippin’ plate once or twice more at home, I’ll give it a go for school lunch. Hurray for new stuff.

Martin peed on the way to the JCC. My fault. In our rush to leave home, I didn’t have him sit on the potty. I figured he had just gone during lunch, and I didn’t want to be later than we already were. In the car I could tell he needed to go. When I asked him, he said he could hold it till we got to the JCC. That never works. At least I had spare pants and underwear in his backpack, so the afternoon wasn’t ruined.

I’m getting sick. But the ibuprofen has kicked in.

One of my March Madness brackets is doing fantastic in Adrian’s office pool, with all 16 of its Sweet picks intact. My favorite team plays tonight.

My son is recovering.

And now I’ve written myself happy again.

Martin, sick but managing his iPad.

Martin, sick but managing his iPad.

Curious George lending Martin a hand to recover from illness.

Curious George lending Martin a hand to recover from illness.