Body Integrity

Martin’s Lyme treatment makes him sensory-seeking, and I am his target.

He grabs hold and squeezes—puts me in headlocks, wraps his arms around my waste, tugs my arms, hops onto my back and chokes me.

His hands are in my hair—pulling my ponytail, removing the elastic, dividing locks into temporary pigtails, transferring whatever is stuck between his fingers (say, peanut butter, or coconut shreds) to my scalp. I don’t have great hair to begin with. Now it’s a downright disaster.

He headbutts my back, my arms, my torso, even my head when he can. It hurts. Then he rolls his head against me, hard. Back and forth. Back and forth. It is winter, and the air is dry. Sometimes his hair shocks me.

He wipes his nose on me, regardless of whether it needs wiping. I prefer when it doesn’t.

He climbs into my and Adrian’s bed and attempts to burrow. Once he gets part of himself wedged under me, he starts to kick.

He stands atop my feet.

He sits next to me and puts his head in my lap. That is fine, until he starts trying to do a headstand. If I flip him upright, he climbs onto the back of the sofa. From there, he headbutts me. See details, above.

When he does these things, he clenches his jaw, as if he cannot get enough sensory input. Occasionally he raises his arm, tightens the muscles, looks scared and uncertain, and brings his hand down to hit me—not hard, not intentionally, more like a slowed-in-air tap, unable to stop himself. In return, I hug him tightly.

I love my son. I love having him near me. But this is getting old.


(Martin, on the campus of Stanford University, last weekend. Only ten years till he applies for admission.)


(Martin, rocking the spectrum at We Rock the Spectrum training facility in Berkeley, California. He rock-climbs much better when wearing sneakers. Also, I forgot to bring his Cal State Golden Bear sweatshirt, so he was wearing Stanford Cardinal red, in Berkeley. Faux pas!)


The moment in a ski lodge when your ASD son—whose Lyme-disease treatment has rendered him so hyperactive that your brother Eddie just had to eat half his dinner holding a squirming boy on his lap, to prevent that boy from ransacking the restaurant—hits the “Floor 1” button in the elevator, then turns directly to three adult men who’ve entered and inquires, “Are you also going to the first floor?”

The moment in the airport security line when your ASD son—whose Lyme-disease treatment has turned him so inside himself that he doesn’t always realize when you’ve started speaking to him—takes his trombone case off his shoulder and holds it proudly in front of him, hinting for the TSA officer to ask him about the instrument, and then answers her question with, “Yes, I am very good at playing the trombone. I even take lessons, every Friday.”

The moment in a Whole Foods Market café when your ASD son—whose Lyme-disease treatment has left him so anxious that he burst into sobs when he lost sight of you, momentarily, in a trampoline center—finds his way to the napkins and silverware, selects the right quantity of each, returns without delay, and sets the table, without being asked.

The moment in a restaurant when your ASD son—whose Lyme-disease treatment has made him so sensory-seeking that he continually puts you in tight headlocks, whenever he’s not trying to wipe his nose on your sleeve—lets you cut his roast chicken, then says, “Thanks! I was getting frustrated with that.”

The moment in the car, in Northern California, when your ASD son—whose Lyme-disease treatment is causing him to perseverate on marching bands and musical instruments, regardless of what conversation is actually happening—calls from the backseat, “I like Southern California better. Uncle Rudy lives there, it’s warmer, and it borders Mexico,” and follows up with, “Why do you say you like Northern California better, Mommy?”

The moment when the new neuropsychologist evaluating your ASD son—whose Lyme-disease treatment has made him so drunken-silly that he interrupted the neuropsychologist’s testing with a giggle fit, and later became infuriated with a challenging exercise and shut off her computer—tells you, “I definitely see issues here. I would say primarily ADHD, and secondarily speech processing delay,” and never once mentions the A word.

Food Porn, Mardi Gras Edition

Tomorrow is Ash Wednesday, so this must be Fat Tuesday, the culmination of Mardi Gras. Tuesday afternoons Martin attends the kids program at our church. Last week, our pastor announced that he planned to serve king cake today.

When Samara, who had taken Martin to the kids program, informed me of this king cake development, I was weirded out. This isn’t New Orleans, and my church isn’t Roman Catholic. We are stuffy Northeastern Protestants. The last time I ate a king cake, I was a 22-year-old graduate student dating a Louisianan whose mother FedExed us the delicacy. (I recall that a Jewish friend found the Baby Jesus trinket, which subsequently was stolen by PeeWee the cat, who batted poor Baby Jesus mercilessly about the parquet floor.) On the other hand, Samara—who is not only Roman Catholic and of Latin American origin, but unable to see Martin deprived of anything—jumped all over the king cake idea. By the time I returned home Wednesday evening, from a mediation I was attending in Los Angeles, Samara had downloaded a recipe for “Paleo” king cake, invented her own sweetened cashew cream filling, and spent four hours baking this:


We popped that base in the freezer. Yesterday I moved it to the refrigerator to defrost. This afternoon I created a frosting/glaze. In the Vitamix, I blended 1/4 cup melted coconut oil, 1/4 cup coconut cream, 1/4 cup cashew butter, 1/4 teaspoon sea salt, and 3 tablespoons raw honey. I spread that on the defrosted king cake:


Next, I used an India Tree decorating set to color four bowls of organic shredded coconut:


Finally, I sprinkled the dyed coconut onto the frosted king cake to replicate the traditional multi-colored appearance:


Martin took the cake to church this afternoon and loved the treat. I’m not sure if I have Samara’s patience to make this every year, but a new tradition just might have been born.

Postscript: Apparently the pastor had trouble finding a local bakery in the business of assembling king cakes this year; by the weekend he had changed course and declared today’s kids program “pancake dinner”—the tradition much more associated with us uptight, Shrove Tuesday types. Of course, the pancakes were not Martin-approved, and the homemade king cake was already in my freezer. So while the rest of the kids had pancakes, Martin ate like a king.

At least he shared.

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.