Actualización I de Nicaragua: La Ansiedad

As consistent FindingMyKid readers may know, I believe Martin’s primary challenge, these days, to be anxiety. Before I dive back into anxiety, here’s an abbreviated rundown of other challenges and where they stand now:

  • We have the rare night when he’s giggly and detox-y, or too anxious to drift off. By and large, however, Martin falls asleep within 20 minutes and wakes ten (or so) hours later.
  • Martin’s difficulties with social/pragmatic language persist, and his language processing lags; he might transpose “you” and “I” in a complicated sentence, or need a multi-step direction repeated. Other than that, Martin can read, hear, and speak at an age-appropriate level.
  • Energy and “floppiness.” Martin does get tired faster than other kids (thank you, mitochondrial dysfunction!), and when the energy runs out, he becomes clumsy, clingy, and sensory-seeking. This condition is improving and can, I find, be managed by alternating exercise and down-time.
  • As may be clear from the series of school bullying posts, Martin’s interest in playing with other kids has increased—it still isn’t very high, and I suspect he may always tend toward introversion (like I do)—but he has trouble figuring out how to go about becoming involved.
    • Example: In the house next to ours in Nicaragua are twin boys, maybe six or seven years old. We hear them playing in their pool constantly. Martin will creep to the edge of the yard and observe without making any effort to engage them, and he scampers inside when I suggest talking to the brothers. I mentioned this to Samara, who said, “I know. He does not like to be told to play. But I have noticed him getting closer to a few kids from camp.” His interactions are cautious and time-consuming.
  • Martin continues to perseverate, in the sense of “talking endlessly about what interests only him.” The perseveration has lessened from the days when he simply could not stop speaking. Now it’s more like memorizing city skylines and assuming everyone else wants to talk about them, too.
  • Repetitive behavior. As for physically repetitive behavior, occasionally Martin still jumps, or hops three times and runs one direction, then hops three times and runs back the other direction. The difference is that now he recognizes the behavior, and makes explanations, like, “I’m getting my jumps out so I’ll be able to stay still for taekwondo.”

All of that is pretty good—not to mention everything that’s so far gone I no longer think to add it to the list, like echolalia or bolting or lack of proprioceptive awareness.

But then there’s anxiety, the mountain so insurmountable that it’s driving me and Adrian to consider medical marijuana. For months, Martin has been clenching his fists, forcing his lower jaw forward, shouting, crying, opposite-talking (“I’m never using my iPad again! Throw it away! No, Mommy, don’t throw it away!”), and generally controlling our family time with his meltdowns (or threats thereof).

I’ve been hoping that moving to Nicaragua for a few months would alleviate Martin’s anxiety.

Three weeks into our summer, I’m pleased to report that I see progress.

We’ve had two very-high anxiety (and crabbiness) events. The first was July 4. We’d been in Nicaragua only three days. Adrian suggested a trip to Granada, a two-hour drive. Martin hated everything about the journey, couldn’t stop asking what we were doing and when we were going home, whimpered and whined through a boat tour on Lake Nicaragua.

After that, Martin did comparatively well until last Sunday, when he and I and a visiting friend made a day trip to Ometepe Island. Sunday morning was nothing short of a disaster. Even before we boarded the ferry at San Jorge, Martin sank into meltdown mode. The situation worsened when we arrived in Moyogalpa and found the driver we’d pre-arranged for an island tour. In the back seat, Martin lost control. He clenched his fists and jaw, lashed out at me, and screamed in English, “We’re never leaving Ometepe! Now we live here! Now we’ll be here forever!”—to the bewilderment of our driver, who spoke only Spanish. With effort, I got Martin calm enough to proceed through a butterfly sanctuary and then take a hike in the adjacent woods. Thank goodness we took that short hike. Something about the muddy path relaxed Martin. He went ahead of me and my friend (which I didn’t love, because we could hear Congo monkeys barking in the trees, and I had no idea whether they were dangerous) until he reached a clearing with a view of the lake. There he stopped and waited for us, and even posed for a couple pictures before declaring himself the “leader” and heading onward. Although Martin never got comfortable, the day improved from that clearing onward, at least until an arduous and uncomfortably overcrowded ferry ride back, which made him sensory-seeking.

 

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Martin, still unhappy as we headed into out post-butterfly hike.

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The view of Lake Nicaragua that seemed to mark a turning point in Martin’s awful day.

Those two events—Granada and Ometepe—notwithstanding, Martin has relaxed in Nicaragua. Somewhat. He’s still thrusting his lower jaw forward (if I can get him to chew gum, that helps) but not clenching his fists or complaining quite as much. He’s been speaking well to adults, even introducing himself. Day camp seems to be going well. We haven’t had many tears this week.

I’m noodling what might explain the limited improvement:

Limited social pressure. Without school, and especially until day camp started earlier this week, Martin didn’t have the same pressure to socialize.

Relaxed mom. We all know that I’m usually half the problem (if not more) when it comes to anxiety. With less on my agenda (I’m trying to cut down on work for the summer), and plenty of rest, I’m pretty chill.

Environment. There is activity afoot in Southwestern Nicaragua. But it’s nothing like the crowds and traffic and bustle of the Tri-State Area, even in the suburbs where we live.

Health. I don’t love Martin’s diet here. With less variety, he’s eating too many carbs (rice) and other sugars (fruits). On the other hand, I’m pleased with his regular ocean romps and exercise, including day camp, taekwondo, trekking, and pool swimming.

Biomed protocol. We continue treating Lyme disease and babesiosis, and we are ramping up the protocol Martin’s doctor set in June, which includes MC-Bab-2, Sida, and pau d’arco. Often we see improvement as we head into a new protocol.

We saw some anxiety this morning, as today was Martin’s first day-camp field trip—back to Granada, of all places! Stay tuned to FindingMyKid for additional Nicaraguan dispatches, including a follow-up on anxiety.

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This was the happier kid on the second half of our Ometepe hike. Later we had lunch and went swimming in volcanic mineral waters.

I Didn’t Wait for a Prescription When I Was a Teenager, So What Makes Me Concerned Now?

Happy Fourth of July! I’m going to spare you another painful post about school and bullying, at least for today.

You’re welcome.

Instead, let’s talk about cannabis. Medical marijuana.

According to governing.com, “[t]wenty-six states and the District of Columbia currently have laws broadly legalizing marijuana in some form,” and once the measures that recently passed in Arkansas, Florida, and North Dakota take effect, the total will be 29 states. “Some medical marijuana laws are broader than others, with types of medical conditions that allow for treatment varying from state to state.” Additional states (Alabama and Mississippi, for example) have passed laws allowing for marijuana possession in the narrow circumstance of an enumerated rare illness.

Recreational marijuana is legal in eight states. That’s not the topic of this post.

Medical marijuana is approved to treat “autism”—or at least some symptoms thereof, in a physician’s discretion—in only five states and the District of Columbia.

I’ll jump in here to say that medical marijuana should be approved in every state to treat (at least) profound autism, as at least one high-profile case in Texas demonstrates. On a personal note, make sure to tune to this blog tomorrow, for my friend Victoria’s testimony before the Minnesota legislature on what medical cannabis has done for her son, Julian.

In my State, New York, eligibility for medical marijuana rests upon diagnosis with “one or more of the following severe debilitating or life[-]threatening conditions: cancer, HIV infection or AIDS, amyotrophic lateral sclerosis (ALS), Parkinson’s disease, multiple sclerosis, spinal cord injury with spasticity, epilepsy, inflammatory bowel disease, neuropathy, Huntington’s disease[,] or chronic pain (as defined by 10 NYCRR § 1004.2(a)(8)(xi)). The severe debilitating or life[-]threatening condition must also be accompanied by one or more of the following associated or complicating conditions: cachexia or wasting syndrome, severe or chronic pain, severe nausea, seizures, or severe or persistent muscle spasms.”

I love the drafting! “[C]hronic pain . . . must also be accompanied by . . . severe or chronic pain,” and “spinal cord injury with spasticity . . . must also be accompanied by . . . severe or persistent muscle spasms.”

For almost a year, I’ve been carrying (but not using) a prescription for medical marijuana for Martin. The prescription was written by Martin’s New York autism physician, not by his California doctor. (And don’t confuse the New York autism physician with Martin’s regular pediatrician. We have a whole medical team.) The prescription is based upon Martin’s irritable bowel disease, which is a qualifying condition, along with the complicating condition of chronic pain. So Martin qualifies for medical marijuana in New York, no doubt. At the time the doctor wrote that prescription, he suggested that medical marijuana could also help Martin with sleeping, attention, and anxiety. Martin was having trouble sleeping again during that particular stretch, an issue that resolved on its own during the intervening months. His attention also has improved this year. His anxiety—well, keep reading.

When, several months ago, I mentioned the prescription to Martin’s California doctor, whom I consider his “primary” doctor for autism recovery, she balked, albeit gently. Martin neither suffers from seizures nor engages in self-injurious behavior, the two autism-related symptoms medical marijuana may help most. Without a clear-cut need, why not err on the side of safety, given the dearth of research available on how cannabis affects the developing brain? I investigated and found that she was correct about the lack of applicable studies. Most research about brain development focuses on recreational marijuana use (of high-THC product) by teenagers; my own search yielded almost nothing about the downsides of medical marijuana in childhood (and I know there must be downsides, regardless of dispute from advocates). With inadequate reassurances, and given that Martin’s sleep and attention are pretty strong these days, I tuck the prescription away again.

But lo! The anxiety. Martin’s anxiety level is so high. (Bad pun for a pot post? Let’s call his anxiety level “Everest-like” instead.) Martin seems to walk the Earth searching for reasons to lose his cool. Two weeks ago, we were Upstate, whence I hail, and Martin had the opportunity to play with same-age cousins he rarely sees. Martin was having a decent morning, acting sociable, until the moment his cousins arrived, whereupon he left reality and switched to talking nonsense (“There are vampires in New York! They are moving to the capital building, to live in the rotunda!”)—eliminating any hope for productive interaction with the cousins. It was plainly his anxiety, up to no good.

And the meltdowns. On the last day of school we invited friends and classmates (both challenged and typically developing) to a pool party. I grilled burgers, beef for the guests and boar for Martin. I had a variety of burger buns on hand for the kids’ diets and allergies. I had no bun for Martin’s burger, because he has never had, or requested, a bun. This time, he did request a bun, and became agitated when I wasn’t able to produce one for him. I wanted to avoid a meltdown, especially in front of the typical classmates, so I let Martin eat an Udi’s® Gluten Free Classic Hamburger Bun. (According to the listed ingredients, these rolls contain resistant corn starch, cultured corn syrup solids, maltodextrin. I never would have given one to Martin under ordinary circumstances.) About ten minutes later, Martin was screaming and clawing at his torso. He’d had some sort of allergic reaction, to something. I pulled off his swim shirt and saw his midsection covered in red welts, with bumps emerging before my eyes. I shoved a spoonful of dye-free Benadryl into his mouth a tried to calm him.

Too late. Martin had slid into his perseverative place, impenetrable by reason or consolation. Awash in tears, he struggled to speak. What brought him there was not, as you might expect, the allergy (terrifying as it had been for me). Instead, Martin had connected the rash with the burger bun and guessed that he would never again receive such a bun. I had no idea whether Martin was reacting to the Udi’s roll; it could as likely have been residue from the beef burgers, or given that he was affected almost exclusively from waist to chest, some contaminant on his swim shirt or something he’d got into around the pool. Martin, however, was not to be dissuaded: The bun was at fault, and now he was never going to get a bun again, never, ever, and Mommy? Can I have another bun? Can you go to the store right now? But never, ever, never again. I hustled the nonsense and tears and screaming into our kitchen, away from the gawking of Martin’s guests.

This is the kind of rigidity that Martin’s anxiety imposes: If I have not foreseen every contingency, including the possibility that he might demand a burger bun for the first time, we risk a setback. If Martin faces any new situation, like meeting cousins, anxiety consumes every social skill he’s developed.

It’s come to the point where I see anxiety hampering Martin’s recovery. His anxiety wrecks havoc with his peers, who respond by alienating him, which further exacerbates the anxiety. The same spiral happens at home. I’m constantly on edge, for fear of provoking a meltdown, and I’m certain Martin perceives that tension, which then prevents him from relaxing. Who could regain health under such circumstances?

You might say I’m approaching desperation. I know that the long-term solution to anxiety is to alleviate its underlying cause, whatever that may be. (I suspect, with little basis other than mommy intuition, that it’s related to the heavy-metal burden we continue treating. Heavy metals can lead to brain inflammation. Cannabis can reduce brain inflammation. Martin’s California doctor thinks the cause is more likely babesia.) But I’m having trouble looking long-term. Martin needs help now.

I’ve been researching. (Remember, I don’t science well.) I’ve learned that the human body produces endocannabinoids, which act as neuromodulators for various cognitive and physical processes, including the regulation of anxiety-dependent behavior.

The cannabis flower secretes compounds known as cannabinoids. Examples include THC (tetrahydracannibinol), which is mostly responsible for marijuana’s psychoactive effects; CBN (cannabinol); CBG (cannabigerol); and CBD (cannabidiol). (Cannabis secretes dozens and dozens of distinct cannabinoids.) Cannabinoids mimic the effect of natural endocannabinoids in our system; they bind to receptor sites usually available to endocannabinoids. THC generally binds to receptors in the brain called CB-1 receptors, while other cannabinoids generally bind to receptors in cells of the immune system called CB-2 receptors. CB-1 receptors affect anxiety and arousal during novel situations. CB-2 receptors affect inflammatory response. Cannabis products can be manipulated to adjust the content of the cannabinoids to address specific concerns.

The endocannabinoid system has been implicated in behaviors associated with autism, such as emotional response, behavioral reactivity to context, and deficits in social interaction; “it can be hypothesized that alterations in this endogenous circuitry [of the endocannabinoid system] may contribute to the autistic phenotype.”

My research also piqued my interest in low-dose nicotine theory, which has shown some success in treating ADHD. That investigation is ongoing.

I’ve been making inquiries with trusted friends in the autism-recovery community. My friend N— noted that she has been administering CBD to her son to help with communication and rigidity, but to little or no effect. I have also given CBD oil to Martin, both the HempMeds® brand and the Plus CBD Oil™ brand (because no THC is present, CBD oil does not usually require a prescription), and have seen nothing from the CBD alone. N— noted that according to the latest research she’s seen, alleviating most autism symptoms requires at least some THC to be present. I think that is correct, and the alternative we are considering currently is using a prescription that would contain some amount of THC: low THC and high CBD.

My friend D—, whose son suffers from both autism and epilepsy along with other medical complications, stressed the importance of careful observation and moving quickly to adjust the cannabinoid ratio (e.g., THC:CBD:CNG) in the hemp product when necessary. D— raved about the difference medical marijuana has made for her son, who has progressed from as many as a dozen major seizures per day to only a few seizures per week. On the other hand, D— was distressed when the THC ratio in her son’s product was increased too much and the nine-year-old seemed “high” before developing a case of the munchies. They quickly reverted to a prior formula.

With my friend R—, I had a lengthy pros-and-cons conversation by text message. For me, the highlight was realizing this, late in the days-long exchange:

My text: “Talked with N—, talked a LOT with Adrian. I think we are going to give mm a shot. I really feel like the anxiety us starting to impede Martin’s recovery. But I’m agonizing over this one. So scared of the effects on cognitive development.”

R—’s text: “I think if you give it a shot for a trial, maybe couple weeks, you aren’t going to do much if any damage.”

My text: “My real worry is that it will work, and we’ll go long-term.”

See how that works? I mean that medical marijuana is intended to be a bridge measure, to alleviate Martin’s anxiety while we work on eliminating the causes of that anxiety. I’m worried that if the bridge measure is successful, we might make it a very long bridge indeed, the attendant consequences be damned.

Last week Martin and I visited his California doctor, and I raised the topic of medical marijuana again, this time more intensely, given Martin’s continuing trouble with anxiety and my own increased facility with the topic.

“You’re looking for my blessing?” Dr. C— asked.

“Not your blessing,” I responded. “This decision I actually think Adrian and I have to make, as parents. But I’d like confirmation that bridging with medical cannabis won’t interfere with any of your protocol for Martin.”

“It won’t.”

With that, the balance tipped. In September, as Martin enters third grade, if nothing has changed with his anxiety, we will likely test low-THC medical-grade cannabis, at least short-term. Having put so much time into research and finally reached a decision, I’d like to get started immediately. But I’m drafting this post from a plane to Nicaragua—I keep thinking I need to tell you about that!—and won’t return home until September. However the laws are evolving in the States, I’m not foolhardy enough to carry marijuana abroad, not in any form.

Ultimately, I know that medical marijuana will not heal Martin. My interest in its use is solely as a bridge measure, to boost the real recovery process.

Have I mentioned that Martin is currently obsessed with bridges?

Del Sur, Interrumpido: Siempre Alguien Hace Leña del Árbol Caido

Monday, last week, was abysmal. Something—a supplement, or an allergen, or another environmental factor, or . . . still trying to figure out—was causing Martin to be anxious and contrarian. He argued every statement, contradicted every request, had trouble holding himself together. Mondays I pick him up from school, we go to the natural-foods market, and I take him to personal training. Last Monday we had to break that routine and replace the natural-foods market with visiting the optician to fit Martin’s new glasses. That was bad enough. Then we spent too long at the optician and ended up late for personal training. Oh. My. Huge. Anxiety.

When we pulled into the gym parking lot, Martin was perseverating on our tardiness, demanding to go home, and trying not to cry. I knew I had work to do before we could enter the gym.

Monday also happened to be windy. Very windy. As I began to open my door, a gust blew it into the Volkswagen Beetle next to me. Just a tap—my door’s plastic rim hit the Beetle’s side panel. I withdrew the door and checked the other car for damage. The Beetle had enough nicks and scrapes that I needed a second to confirm where my door made contact. At that spot, I saw no damage.

Just my luck: A woman was sitting in the Beetle’s driver seat, texting or something. She thrust her head through her open sunroof and, glaring at me, contorted her face into a grimace.

I said, “Sorry The wind got hold of my door. Thank goodness it didn’t leave a mark.”

My mind, at that moment, was occupied about 2% with my car door, and about 98% with Martin’s potential meltdown, so I started to exit in order to deal with Martin.

The other woman’s mind, by contrast, seemed 100% occupied by the fact that my door had tapped her Volkswagen. She scowled, and yelled, “You’ve got to be more careful!”

“Yeah, sorry,” I repeated as I walked around my car to retrieve Martin. I helped him down from his seat and walked him to the back of my SUV, where I had enough space to kneel and take his hands in mine while reassuring him. This position, me kneeling in front of Martin, holding his hands and available for a hug if necessary, is our best defense to a meltdown. Martin was alternating among might-cry face, a few tears, and deep belly breaths to gather his composure. After 15 or 20 seconds, we were starting to get the potential meltdown under control. I was able to use one hand to wipe tears from Martin’s quivering cheek.

And then—VW Beetle chick decided she had found an appropriate time to address the non-existent injury to her jalopy. (Pardon my attitude. I believe it justifiable.) She exited the driver seat, walked around to the side panel my door had tapped, which was also close to me and Martin, and commenced a conspicuous inspection. The inspection involved leaning very close to her car, flashing me an angry expression, slurping diet soda, waiting for a response from me, and upon receiving no such response, repeating the entire process. At any other time, the situation would have been laughable. At this moment, as I sit here writing, the situation is laughable. Last Monday, on the other hand, in the midst of Martin’s anxiety, I felt my blood begin to rise. Seriously, lady? Seriously? I am—literally—on my knees in a gym parking lot, imploring my angst-ridden seven-year-old to hold his s*&t together, and you’ve found the perfect time to confront me for accidentally bumping the side panel of your car? I perceived a change inside me. Country-raised, uniformly polite suburban mom spirit was leaving my body. In her stead came chip-on-the-shoulder city girl. I started to stand. I was about to get up in this woman’s face, and not a little bit. I was about to be inches from VW chick’s nose.

And then—Martin’s chest heaved, and tears came. Instantly, I knew that Martin knew that I was on the verge of getting into it with another adult. I returned to my knees, reclaimed his trembling hands, and told him softly not to worry. I smiled. I reassured him that I had texted the personal trainer that we were coming late, so it was no big deal. I said how cool his new glasses looked, and that we were having his favorite lentils for dinner later, and that I might even make rice.

I would rather report that the VW driver realized her timing was off, that she said something like, “I can see you’re busy. Would you mind finding me in the gym after your son calms down?”, and then departed with only a glance at my license plate to ensure honesty.

She didn’t. She started the Beetle inspection routine anew. When she reached the part about slurping diet soda and waiting for a response from me, I raised my left hand to block her from my view. I actually gestured, “Tell it to the hand, because the mama ain’t listening,” and concentrated instead on Martin’s needs. I held my hand aloft, ignored the idiotic car inspection, and comforted my son.

Finally, VW chick aspirated a noise somewhere between grunt and sigh, as if she just couldn’t believe my nerve, and stormed into the gym. Our confrontation skipped climax and proceeded directly to denouement. Here’s the denouement: I was shaken. I was shaken because this woman had been so oblivious to Martin’s plight. I was shaken because I’d let her get to me. I was shaken because, if there is one thing I try to impart to Martin, it’s that his mom is in control, and he’d just witnessed me almost lose control.

When Martin and I were ready to head into the gym, I took another look at the Beatle and noticed fresh flowers in the dashboard vase.

That driver didn’t deserve fresh flowers.

There are two more posts coming in the Del Sur series. I interrupted, again, to report that someone will always kick you when you’re down.

New Year!: We Got Up Late Because Martin Had a Tough Night

Happy New Year!

Adrian and I didn’t make it till midnight, New Year’s Eve. Didn’t even try. We were in bed by 9:00 pm, in a vacation house in Park City, Utah. On New Year’s Eve, our family (1) got up late because Martin had a tough night, (2) skied, (3) met one of Adrian’s colleagues for a drink, and (4) zipped by a Whole Foods Market. From each of those four activities gives me a heading for a “Martin right now” mini-essay. I’ll post them in four installments.

New Year! (1) We got up late because Martin had a tough night.

Martin is in treatment for Lyme disease. His LLMD wants to treat with antibiotics. His MAPS doctor, on the other hand, prefers to treat Lyme anti-microbially, which she says is as effective as antibiotics without the potential negative effects for gut bacteria. The LLMD and MAPS doctors have talked to each other. For now, the LLMD is letting the MAPS doctor “quarterback”—that’s the LLMD’s word, so catchy—Martin’s Lyme treatment, and we’re going with the anti-microbials.

I think they must be working, because while Martin’s cognitive and physical functioning are smooth, his adrenal levels seem maxed out. He is full of anxiety, looking for excuses to melt down. New Year’s Day, Adrian was listening to a Frank Sinatra song when Martin started crying because he remembered that the song was recorded before his parents were born. Honestly. Martin was playing a video game, heard the song, and burst into tears. The only reason he gave was the date that Frank Sinatra recorded “I’ve Got You Under My Skin,” and it took several minutes of comforting to soothe him. If that’s not adrenal stress, I don’t know what is.

Autism and even, to some extent, healing cause stress. Sometimes the process of getting better means that Martin’s body hardly knows itself, or what is coming next. The body can react by producing excess adrenal hormones, like dehydroepiandrosterone (DHEA) and cortisol. The hormones cause meltdowns. The overall stress diverts blood flow away from the gut, affecting nutrient absorption, which pressures the pancreas to keep up with digestive enzymes. The stress also stimulates the liver to increase glucose production to feed the muscles—and I think you know what mayhem excess glucose can wreck in an ASD kid.

Martin is also exhibiting increased OCD symptoms, which for him accompany adrenal stress. His current obsession is making sure he sees a digital clock anytime the digits are all the same, i.e., at 1:11, 2:22, 3:33, 4:44, 5:55, and 11:11.

These factors—adrenal stress and compulsions—have affected Martin’s sleep, too. In “Curse the Night,” I described how Martin couldn’t sleep Christmas Eve because of his anxiety that Santa Claus might not come. In the night between December 30 and New Year’s Eve, Martin woke from a nightmare: I think it was about skiing (see next post), because he woke exclaiming, “No, no, not so fast!” He stayed awake from 2:30 am until after 5:00 am, declaring himself simply unable to sleep, asking for me to be with him, and worrying about the time—“It’s 3:12! It’s not 3:33 yet!”—until finally I hid the clock.

Night waking has been so rare this past year that nowadays it really throws me for a loop. I just don’t have the stamina to get by without sleep anymore. I dozed off, lying on the sofa, until Adrian’s alarm sounded at 6:00 am, our usual waking time for skiing. Then I told Adrian that Martin had been up for hours and was now asleep, set my alarm for 8:00 am to call his ski instructors and say he’d be late for his 9:00 am lesson, and crawled back into bed for a couple hours. We let Martin sleep until after 9:00 am, then ate a big breakfast and finally reached his lesson at 11:00 am.

Martin remained high-strung all day, and does still as of this writing.

(I will provide more information on the Lyme disease in a subsequent post. I am almost as excited about writing that as I was for the recent informative post about mitochondrial support.)

Chatty

Let me begin this post by stating that nothing written here is intended to make fun of Martin. This is a post about language, oral stimming, perseveration, and behaviors that, for the most part, are not within Martin’s control. Although some of the verbal stream I’m conveying may, in retrospect, come across as amusing, when this is happening—when Martin is saying these things, nonstop—nothing sounds funny. When Martin is saying these things, nonstop, I could never laugh because I am too busy trying to keep my head from exploding.

Martin has been talking a blue streak this week. I’ve written about this phenomenon before, when Martin starts speaking and cannot stop. It happens most in the morning. It used to be that Martin would repeat one statement, or one statement and several variations on that statement. As his language and other skills have improved, he’s broadened the repertoire. Now when he can’t stop talking, he cycles through many familiar topics.

During breakfast one morning this week, when Martin and I were alone in the kitchen, I tried to capture his monologue. (I call it a monologue because I seldom interjected. I struggle with deciding to what I should respond, especially when Martin wants attention more than an answer.) Through a combination of recording, scribbling, and recalling after-the-fact, I was able to transcribe the following. This is not verbatim, I’m sure, but it’s close:

When I grow up I am going to live by myself. I don’t want to have any roommates. I am going to be a man who has horns. I am going to have long hair. Mommy, when I grow up I am going to eat peanut butter Lära bars. Do they still play concerts in Central Park? Can we go there? I want to go there. I’m not going to school today. Is it your birthday? Mommy, whose birthday is it? Your brother Rudy and your niece Mandy have the same birthday. How old did Uncle Rudy turn on his birthday? Mommy, Uncle Rudy turned 47 and my cousin Mandy turned six. Mommy, how old are you? You are 42 years old. Do all kids have middle names? Do you have to practice to be a crucifer? I’m going to be a crucifer when I’m in middle school. I’m never going to be a crucifer. I’m never going to school again. You should move out. Go! I’m going to live alone. I want you to be my mommy forever. Is Daddy going to keep going to work? When you were with Miss Cara and Miss Eileen and Miss Tomomi during my play date, what did you do? I want your family to have another baby. Are many of my friends only children? Are all of them? In the eighth picture about the fireplace, are you holding me when I’m a baby? When you were a child, was it allowed for children to ride in the passenger seat? You married your husband in 2005.

Martin said all this, almost without pause, as he was sitting at the kitchen table drinking (or, as it were, not drinking) his bone broth. I’m never quite sure what sets Martin to nonstop talking, or whether a monologue like this is oral stimming, perseveration, attention-seeking behavior, anxiety, or some combination thereof. I’m frustrated when this happens, to be sure. I survive by focusing on Martin’s language skills. Do you remember when I was overjoyed that he managed to say, “I want you to do that again”? Compare that with the perfect sentences structures Martin rattled off this week. Those sentences were perseveration, and he could not slow down, but at least he had the words.

At least he had the words.

The Bad Nights Aren’t So Bad

Martin’s had two nighttime disturbance in the past two weeks.

Last Tuesday I heard him crying at 10:40 p.m. Crying usually signals a nightmare or some other fright, and such was the case. He had fallen out of bed. He was plopped on the hardwood floor, clutching his stuffed elephant, confused. I lifted him back into bed, checked for damage, reassured him while rubbing his back, then returned to the kitchen as he dozed back off.

This Tuesday he woke me by calling “Mommy! Mommy!” at 1:10 a.m., from his bed. That’s a worse sign; calling for me indicates that Martin is fully awake, and going to be up for a while. I went to his room and said, “Martin! It’s still nighttime. Go back to sleep until morning.”

“I want you to get in my bed,” Martin replied.

“No. I’m going to sit outside your door. You go back to sleep.”

“I want you to sit in the rocking chair,” Martin said. The rocking chair is in his room.

“No. But I’ll be right out here,” I said and exited his room, leaving the door ajar. I stepped into my and Adrian’s room—our door is only four feet from Martin’s, across a small landing—to retrieve my iPad.

Martin started to cry. “Mommy! Mommy! I want you to come inside.”

“Martin!” I said from just outside his door as I powered up the iPad. “You’re fine. I’m right here. Go back to sleep.”

He cried a little more, called, “Mommy! Mommy!”, and fell silent.

I sat down and scrolled through my friends’ Facebook statuses. Since I’d also done that right before I fell asleep 90 minutes earlier, there wasn’t much to read.

Martin started up again. “Ah, Mommy! Ah, Mommy!”

“Martin! Don’t be silly. It’s sleepy-time. Sleep.” I closed Facebook and called up a Scrabble game I had in progress against “CPU.” CPU was beating me by 95 points.

Ten minutes passed. I shut off the iPad, to gauge whether Martin would react when the glow disappeared from outside his door. Nothing. I waited another couple minutes, then quietly rose and returned to bed. It was around 1:30 a.m. I fell asleep.

“Mommy! Mommy!”

2:02 a.m. He was at it again. I stayed in bed and called, “Martin, it’s sleepy-time. Sleepy-time!” Next to me Adrian groaned and flipped onto his stomach.

“Ah, Mommy!”

“Martin, stop it! Go to sleep.”

Silence, then sudden crying. Martin was going to push the point. I got back up, grabbed the iPad again, and returned to my perch outside Martin’s still-ajar door. “I’m sitting right here,” I said. “Sleepy-time.”

Martin stopped crying and started chatting to himself: “You’re right there. Mommy is sitting right there. Mommy is right there.”

No new Facebook status updates. More Scrabble for me. Big defeat to CPU. I’ve got to stop setting the Scrabble difficulty level to hard, at least when I’m playing half-asleep. I shut the iPad off and listened for a reaction from Martin. Nothing. I snuck back to bed and dozed off.

“Mommy! Ah, Mommy!”

2:54 a.m. Martin was still awake. I called to him from my bed, eliciting more rumblings from Adrian. This time Martin didn’t push the point. Without crying, he said, “You’re right there.”

“Yes. I’m right here.” I didn’t leave my bed. I fell back to sleep.

Martin woke me at least twice more; the last time I recall was around 3:40 a.m. Each time I was able to quiet him without getting up again. Finally I heard no more from Martin, and I slept until my 6:00 a.m. alarm.

I estimate that, in total, Martin was probably awake for three hours. I entered his room just once. About 40 minutes of the three hours I spent crouched outside his door with my iPad. The remainder of the period I slept, albeit with interruptions.

I would not describe this as a good night. Not by any means. But it is progress. We aren’t so far from the time when Martin routinely woke for three-, four-, and even five-hour stretches during the night, and either Adrian or I had to be in his room every minute until he returned to sleep. Sure, he was up this Tuesday night, but (1) it was an unusual occurrence, (2) for the most part he stayed alone, and (3) eventually he got himself back to sleep.

Sure, I had to be up, too, and my calling out from our bed bothered Adrian. But for the most part, I remained horizontal, in my own bed. Anyone who suffers chronic lack of sleep will tell you—horizontal rocks.

Go to sleep, little man. Seriously. Sleep. Please.

The Good Kind of Sleeplessness

I’m drafting only a short post this evening.

I’m tired, you see.

I’m tired because I didn’t sleep well last night. I lay in bed awake for several hours, until 2:00 a.m. I woke when Martin clambered into my and Adrian’s bed, around 8:00 a.m.

Here’s the thing: Martin didn’t keep me up until 2:00 a.m. He didn’t wake at midnight and rustle for hours while I hovered nearby, iPad in hand. Nor was I anxious, thinking that he’d be up as soon as I closed my eyes, or pondering his future.

Incredibly, I wasn’t able to doze off because I wasn’t tired. Each of the previous several nights, I enjoyed eight or more hours’ sleep. My body, apparently, felt sprightly enough to play a few additional games of on-line Scrabble and then gaze two hours at a near-full moon.

Since Martin’s ASD diagnosis almost two years ago, and even before that (from age 14 months on, he had sleep troubles), and even on vacation (I worry a lot), I cannot recall a single night when sleep eluded me because I wasn’t tired. Between 16-hour days managing Martin’s recovery process, and worrying about whether we’ll succeed, and sitting up with him, I function in a state of permanent exhaustion, punctuated only by degrees. Most nights, I lose consciousness before I finish a 30-second prayer. The remaining nights, anxiety so clogs my mind that I give up trying to sleep and wander the apartment “getting things done” throughout the night.

We’re on vacation this week, in a rented seaside house that compels relaxation. Martin has been sleeping well. My mother-in-law is traveling with us; she wakes with Martin each morning and washes and dresses him before releasing him to me and Adrian. Despite the crap summer we’ve been having, I am sleeping.

I’m off to sleep more now.