Monthly Archives: January 2018

Searching the Storm for Silver Linings

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It’s 6:53 a.m. I’m sitting on the commuter train to Manhattan, where I will transfer to a subway to my office. The train, which was scheduled to depart at 6:45 a.m., has not left the station (our community is the train’s origin), because a door is stuck open. Here we sit, waiting.

This morning, the train feels like a metaphor about Martin’s recovery: All ready to go, everything operational, until something unexpected jams the trip.

Martin talks a lot these days, and he has no filter, and it’s getting him into hot water with children and adults alike. Here are the texts I received yesterday from the behaviorist at Martin’s school (edited for length and clarity):

Problem this week was really filtering. I did take Martin out of class today. He was telling some boys on the carpet they were dead. Boys said stop. Teacher told Martin not to say that, it is not funny. He said yes it is and repeated laughing. She then asked him to move his seat and come sit by her (class was on the carpet). He told her no and continued to laugh and repeat.

At that point I stood up and told him to come with me to the hallway. He said please no. I just gestured and he came. I spoke to him sternly outside.

I told him no more trying to be funny. He is saying hurtful things. I typed up the “hurtful things” he said this past week and went over them with him. The speech teacher will do that as well.

[Here she forwarded me a photo of the write-up of “hurtful things” Martin has said. The worst was telling a girl she should not be in the school because of the color of her skin. Martin doesn’t believe that (I hope). He’s been perseverating all month on Martin Luther King, Jr. and his accomplishments. I’m guessing that he interpreted his comment as funny based on the absurdity of past discrimination. Still, hearing that Martin had utter such a remark sent my emotional state tail-spinning.]

The aide who covers specials also made a very good observation. She said some of the boys who play sports together are very friendly and in gym they purposely bump into each other, play footsies, etc. Martin sees this behavior and then of course when he tries to execute it does so in an inappropriate fashion or at an inappropriate time.

So the boys are joking around. Martin observes this and then doesn’t understand why when he does it it’s not right.

Yesterday, at church Kids’ Club, I heard Martin yelling, during kickball or some other game in the gym, “Raise your hand if you’re native!” He meant Native American. The term came up this week, when Martin asked me why Northwest Territories, Nunavut, and Yukon are Canadian territories instead of provinces, and I tried to discuss former European colonies versus territories with more First Nation and Inuit influence. On some level, I know that Martin is genuinely curious about the relationship between native and colonizing populations. On a more immediate level, I am horrified that the expression of his curiosity is demanding to know who among his church peers has native heritage.

I’m at my office now. That commuter train I was sitting on—it got cancelled. The maintenance crew couldn’t fix the door. All passengers, including me, had to gather their belongings and catch the next train, scheduled 34 minutes later. The business call I was planning to take form my office at 8:00 a.m. had to be rescheduled. The later train, of course, was crowded and uncomfortable.

But at least I had a seat; by the second stop, onboarding passengers were standing in the aisles. At least I waited the extra half hour inside a train; passengers at all subsequent stops were standing outside, in the cold, on the platforms.

At least I had a home to come from, and a job to go to.

At least Martin is talking, and attending school.

Take Heart. There Is Also More Than I Can Manage

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It’s been seven years since we began biomedical interventions aimed at recovering Martin from autism, and though I always wish wellness would hurry up and get here, overall I am pleased with our success. Last semester we had a CSE meeting with our school district and, at our request, reduced the special-education services Martin receives. With newfound social awareness, Martin has grown resistant to being pulled so often from his mainstream classroom. We decided that we can still meet his needs even without physical therapy (taekwondo helps) or resource room (we’ve hired a reading tutor instead), and we’re cutting speech therapy from three sessions per week to two. Outside of school, Martin recently had a successful play date with typically developing twins, albeit 17 months younger than he is. Progress, progress.

How have we reached this point? Through utter, over-the-top lunacy. By my leaving my law-firm job to work on Martin’s recovery. By moving out of New York City, and into a house adjusted to meet his needs, from electromagnetic-shielding to environmentally sensitive paint. Through a variety of specialty and highly restricted diets, all home-prepared and as organic as possible. With homeopathy and, early on, homotoxicology. Through large medical bills (on top of pushing the limits of our insurance) for a team of MAPS(-ish) practitioners, an LLMD, geneticists, traditional and nontraditional allergists, developmental optometrist, neurofeedback practitioner, HBOT therapist. By insulating Martin from the commonplace, like fluoride, chlorine, harsh cleaning agents. On the non-biomed side, through special-education settings, hippotherapy, social-skills playgroups, a psychologist. And of course, by summer relocation to Nicaragua.

From the beginning, I have had to acknowledge the privilege inherent in what I can do for Martin. We are a two-parent family with one child. Adrian’s income as a law-firm partner made it possible for me to stop working and focus on Martin, and for us nevertheless to cover the expense of biomed. We live in an area rich with resources. Adrian himself believes in the biomedical approach. While he may select restaurants without enough regard for Martin’s restrictions, or plan trips that make it difficult to adhere to our supplementation routine &c., he never questions my research or seeks to undermine.

What we do for Martin appears extreme, to a good many folks, and that’s okay. It is extreme. I’ve always said I would do anything necessary for Martin’s recovery.

Yet, more and more often, I encounter parents who do more than I do.

Example: Parents who homeschool. That’s not happening for us. I love Martin and cherish our time together, enough so that—other than cooking—I get nothing done when we’re together. I need the six-hour break when he’s in school. I need the time to work, to shop, to research, to order supplements, to breathe.

Example: Parents who truly master the science behind medical challenges and recovery. When my family makes a big decision like medical marijuana, I try to do a lot of research. I read summaries and abstracts and, where necessary, delve into scholarly articles—which is tough. I’m no good at the science component. I’m forever amazed by parents who seem able to answer extremely complicated questions of physiology or neurology at the drop of a hat. Perhaps they were doctors in their pre-autism lives. Or perhaps they just managed to complete something more impressive than “Chemistry for Non-Science Majors,” which was the class through which I fulfilled my core science requirement in college.

Caveat: One could argue that anything biomedical we do with Martin is a “big decision,” because anything has the potential to affect his health short- or long-term. True. On the other hand, my anxiety is satisfied with comparatively less investigation when it comes to, say, Vitamin C supplementation than when it comes to, say, chelation.

Caveat: There are also plenty of parents in my on-line groups who, even to my weak eye, get science and even basic facts wrong. I wasted time one evening explaining why the statement “All soy contains GMO estrogen” was untrue (in varying ways). Another occasion, I spent hours trying to track down the source of a statistic about MTHFR mutation and autism that was being thrown around as gospel. I failed, even after looking through all eight articles in the medical journal to which the statistic was vaguely attributed.

The core point is this: In the event anyone feels disheartened because s/he can’t manage what we do for Martin, know that I too become disheartened by what others manage that I cannot.

Martin needs more detox support. For detox support, he takes a few herbal remedies, does a detox bath (two cups Epsom salt, half a cup baking soda, and essential oils) several times per week, and when we have time, sweats in our infrared sauna. But he needs more. I can tell because he becomes silly and inattentive (behavior I associate with detoxing) at certain times each day, usually when his antimicrobials are taking effect. So I went searching for a supplemental detox protocol and found a post, from the excellent blog Regarding Caroline, titled, “DETOX the Die-off and feel amazing again! [our roadmap to success].”

Call up the post, if you have a minute. Read through, past the various strategies of castor oil packs, dry brushing, &c., down to that part subtitled Our Daily Detox Routine. It’s amazing! Herx water and lymph drainage massage before breakfast, cytokine and lymphatic supplements mid-morning and early afternoon, foot bath during dinner, dry brushing before shower, more lymph drainage massage in bed, so on, so forth. Martin would undoubtedly benefit from that type of detox routine. So much detox might eliminate silliness altogether, which would help so much with social skills; just this afternoon, Martin said to me, “I know I shouldn’t laugh at jokes from inside my head when I’m with friends. I can’t calm my body and control the laughing!”

So Martin needs a routine like that.

But—

But I—

I came away from this post feeling, I imagine, the way an autism-recovery newbie might feel after some time on Finding My Kid: What? How? How could I possibly do all that—do anything close to that—on top of the day-to-day grind I already endure? Martin attends school; we’ve established that. He has at least two activities after school every day, which include taekwondo practice, music lessons, psychologist appointments, social-skills playgroup, reading tutor. Then there’s homework (which still takes inordinately long, given his attention issues), trombone and drum practice, (now) chess practice, half an hour of iPad time (as a reward for completing everything else I just mentioned), dinner, two snacks, and school-mandated 20 minutes of reading before bedtime. We do his pills and drops at wake-up, breakfast, immediately after school, before dinner, during dinner, and at bedtime. When the dry brushing? When the detox supplements, which must be separated from everything else?

You may be thinking, hey, why not drop a few activities? I would love to. Here are examples of my excuses and counter-proposals:

  • The most cumbersome activity is taekwondo, which Martin does five times per week. He would attend seven times per week if the lessons were available. Most kids attend two or maybe three times per week. We indulge Martin’s habit because (1) taekwondo is one of the few activities that excite him, and (2) even coming twice as much as other kids, he still has trouble keeping up with them, and every time classmates have the opportunity to pass a belt and Martin doesn’t, the experience pains him.
  • His music lesson is a combined once-weekly trombone and drum lesson. He wants to join the school band next year, in fourth grade. He’s been at the trombone lessons for two years, and he isn’t very good. Last fall he asked to change to percussion. We don’t like him hopping around on a whim, so we allowed percussion only if he also stuck with trombone. Then he showed a knack for drums and immediately became a better percussionist than trombonist. If he’s going to succeed in band, drums are probably the key.
  • Chess is a new activity, at my urging. Our community has an active chess program for elementary kids, and I’d like to have Martin involved in at least one quiet, thoughtful activity with peers. The participants, however, have by and large been playing for a while, and Martin needs to catch up, so I have him taking a lesson once a week and practicing the other days. If I can’t have a hockey player, darn it, I will have a chess player.

The truth is, I would rather keep Martin busy. We still don’t have many play dates to speak of, and when he’s not busy, he’s whining for an iPad or for me to entertain him. Of course he needs to develop the skill of entertaining himself, but at least until he can read for pleasure, we probably aren’t there yet.

So there you have it. There are, indeed, parents who do more for their kids than I do for Martin. Far more—even excluding the subset of parents who must do more because their children are extremely high-need. I, too, become overwhelmed at the thought of all I should be doing.

I hope that a parent who reads Finding My Kid and thinks, “No way!” might nonetheless think also, “Okay, part way. I can do some of that.” So that’s the course I took. I analyzed the Regarding Caroline suggestions, took what seems do-able for us, and came up with a Martinized protocol:

  1. We will do a foot bath during iPad time at least four days per week. I prefer Martin to be seated at a table for iPad time in any event, because otherwise he hunches and puts his face too close to the screen.
  1. We will attempt dry brushing Saturday (or Sunday), Wednesday, and Friday. Those are the evenings when we tend to be less rushed.
  1. I will add herx water before breakfast and after school.

That’s it. Those are the suggestions I think I can manage.

And, mind you, the list is aspirational.

One Strike, Almost a Second Strike, and a Continuation

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We had the talk with Martin.

Or at least we attempted the talk.

I’m talking about the talk described in my last post.

That talk. The one in which we discuss with Martin how he really is different from other kids.

When Adrian and I met with Martin’s psychologist, she didn’t advocate for revealing Martin’s diagnosis (“ADHD with social-pragmatic language delay”). Instead, the said the better approach might be to talk with Martin in terms of what he’s good at (say, memorizing facts, or learning geography), what he’s pretty good at (say, math), and what still gives him trouble (say, paying attention, or knowing what people mean when they interact). Then we could point out how everyone has a third category: Everyone has trouble here and there.

Adrian and I, strategizing, decided to raise the topic when we went out to dinner Sunday evening. That was my idea. Martin gets nervous when we ask to speak with him at home, because he thinks he’s in trouble. We eat Sunday dinner in a restaurant nearly every week, Martin feels comfortable in that setting, and we make him talk with us anyway, in order to practice manners and to reduce time looking at an iPad or iPhone screen, which is what he’d prefer to be doing. Sunday afternoon, I made paper charts with three columns:

  1. “Things I’m not so good at.”
  2. “Things I’m pretty good at.”
  3. “Things I’m very good at.”

There was a chart for each of us. I thought we could take the focus off Martin by discussing, first, my and Adrian’s weaknesses. After we ordered, I distributed the charts, presenting them as a “fun family activity.” Into column 1, on my chart, I put music, not being anxious, being on time, and paying attention. Into column 2, I put talking to friends, meeting new people, sports, and cooking. Into column 3, I put math, taking written tests, and writing. (Feel free to dispute whether “writing” belonged in my “very good” column.) Adrian admitted that he stinks at soccer, cooking, and being patient, said that he’s pretty good at speaking English (not his native language) and singing, and claimed to be very good at reading and being on time. I struggled to make out most of what Adrian wrote, so I grabbed his chart and added “writing legibly” to the “not so good” column.

Martin went straight for column 3, “very good at”: taekwondo (debatable), skiing (getting there), drums (still figuring out), and spelling (no doubt). In column 2, he included reading (I agree, if we mean straight-up reading, and not reading comprehension) and being patient. Then he stopped, before getting to column 1, “not so good at.” He asked me what he’s not so good at. I replied based directly on something he’d previously told me. “Remember how you told me other kids have better handwriting? So maybe something you’re not that good at is coordination.” “What’s ‘coordination’?” “Coordination is being able to write neatly, or move without bumping into things, and stuff like that. Daddy also doesn’t have much coordination.” “How do you spell ‘coordination’?” “What do you think?” “C-O-O-R-D-I-N-A-T-I-O-N.” (Because, spelling.) He wrote “coordination,” then added “basketball.”

I thanked Adrian and Martin for filling out their charts and began the soliloquy I’d rehearsed, about how everyone has skills that come easy and tasks that make them struggle. I completed less than a sentence before Martin interrupted me to ask, “Is anyone going to see these lists?” I said no, the lists were just for our family to see. Martin flipped his chart face-down and said, “I think we should put these away in case a waiter sees.” I gathered the charts and tucked them into my purse, then resumed speaking. Martin interrupted again, “I think maybe the waiters can hear you.” I promised to speak more quietly. He said, “I don’t want to talk about this.”

Adrian spoke up. “I think maybe Martin would rather have this conversation at home. Is that right, Martin?”

“Yes. At home.”

Strike one.

We got home late (by nine-year-old standards). I did Martin’s supplement routine and got him into bed. Adrian joined, and we restarted the discussion. As soon as I got to the part about everyone having struggles, Martin declared, with finality, “I’m not good at coordination,” then tried to change the subject. I, ever tenacious, suggested other struggles, again from his own prior statements, like his eyes wandering from the page or understanding what peers mean when they speak. Martin said, “I don’t want to talk about this.” I tried to convince him to have the conversation, that discussing strengths and weaknesses helps us understand ourselves. He rolled over and buried his face in a pillow.

It looked like we were headed for strike two, so I threw a Hail Mary. (Apologies for switching sports in my metaphors. I was going to say that I swung blindly, but that’s hardly a way to avoid a strike.) I said, “Do you remember when you said that you’re not a normal kid? Well, no one is a normal kid. There’s no such thing as a normal kid. Every kid has strengths and weaknesses.”

Martin turned his head enough to look at me from the pillow. “No one is normal?” he asked.

“Nope, no one. Even if you can’t see other kids’ weaknesses, they still have them.”

Martin shoved his face back into the pillow, but I could see him nodding in agreement. Good enough. Adrian and I said our goodnights and left.

This is destined to be an ongoing conversation, we decided. We must continue encouraging Martin to discuss his differences and how they affect him. I’m also questioning the wisdom of not revealing his diagnosis. In my head, I’m pursuing a conversation with Martin that opens this way: “Martin, have you ever heard of ADD? It’s a condition that affects a person’s ability to concentrate and pay attention. It’s not the person’s fault. If a person has ADD, her or she can treat the condition and make it better. You have ADD. It’s not your fault. You take all these pills to help make the ADD better.” I’m not sure where that will go, and I have yet to run the idea by Adrian.

The deep, meaningful conversation I hoped to be describing in this post hasn’t happened. So, alas, I need to end this post the same way as the last:

Stay tuned.

Time to Tell

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In my last post, I wrote this:

[Martin] even said to me, before Christmas, “Mommy, do you remember when I used to be real shy and have trouble talking to people? That’s getting better. Now I can talk to people.”

By the way, in the seven years since he was diagnosed, Adrian and I have never told Martin that he has, or had, autism. I guess maybe we’re going to call his spectrum disorder “shyness.” I can live with that, at least for now.

This week, Martin followed up, in bed, during our “little chat” (which has become a nightly ritual). He said, “I need help with being shy again.” I asked what he meant, since he’s been doing so well talking to people. He replied, “I’m not doing it right. They don’t answer back.” I asked, “Do you mean how kids sometimes ignore you?” I’ve seen that happen, at school or taekwondo. Martin, in his eagerness, calls out, “Hi, Abby!” or, “Hi, Caleb!” and waves awkwardly as the other child pretends not to hear or makes a face and looks away. Kids can be despicable. Martin replied, “I said thank you to the waiter and he didn’t say ‘You’re welcome’ or anything. I need someone to help me do it right.” So in this instance Martin appeared to be talking about when he issues a comment without making sure he has the recipient’s attention. Most likely he had his face buried in an iPhone or the menu when he said thank you, and the waiter failed to realize he’d been spoken to.

Our little chat about shyness came on the heels of Martin declaring, the previous day, “I’m not a normal kid!” When pressed, he said that his eyes wander. I asked if he meant how he can have trouble looking people in the eyes when they speak. Martin’s eye contact during speech, for what it’s worth, is much improved. Eye contact no longer seems to make him uncomfortable; these days, instead of avoiding eye contact, he just seems to forget to look at his conversation partner. Martin said, “No, like when I’m trying to read. I want to look at the words but my eyes wander away.” Ah. An attention issue.

I relayed both conversations to Adrian. Then I asked him whether we want to reconsider the decision not to tell Martin he has a diagnosis. Together, we decided that the time has come to tell Martin that, indeed, something makes him different from other kids. We reason:

  1. His current diagnosis is ADHD with social/pragmatic language delay. Right or wrong, people find “ADHD” less scary than “autism” (in case Martin starts talking about his diagnosis).
  2. Previously, hearing that he has a disability might have been disheartening. Now, by contrast, we can point out that talking, fitting in, and acting like the other kids are getting easier—Martin has said as much, himself—and will continue to improve.
  3. His self-esteem needs a boost. He sees the discrepancies now, sees himself on the fringe. He needs to know that he’s not a bad kid; he has a body invader called ADHD that we are working on evicting.

We’ve got an appointment tomorrow morning with Martin’s psychologist, for her advice on how to tell Martin, which we hope to do as soon as this weekend. Right now the conversation looms large. On the other hand, a tiny part of me thinks Martin will respond with something like, “Yeah. I already know that.”

Stay tuned.

Martin ice skating after a day on the slopes, Beaver Creek, Colorado.
Martin participating in the “Kid Parade” as part of Winterfest, Beaver Creek, Colorado.

Awareness

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A few months ago, Martin stuck part of a toy—the pink hand of a rubber action figure, perhaps; we reached no conclusive determination—in his left ear, which his MAPS(-ish) physician (“Dr. E”) discovered during a routine check-up. The next day we trooped over to an ENT specialist for removal. That doctor proposed placing a hollow cone with lighted tip into Martin’s ear, then reaching through the tip with a long tweezer sort of device to grab the “pink thing” (as Dr. E had dubbed the object). The procedure, if Martin held still, would be painless and last only a second or two.

Martin let the doctor peer into his ear but drew the line at the tweezer thingy plunging in there. Each time the doctor got close, Martin yelled, cried, struggled, and protested, hands clenched over his ear. The doctor was all patience, leaving the room while I calmed Martin and returning to try again, and again, for almost an hour. Finally the doctor suggested that we restrain Martin, and I agreed. I took Martin on my lap, crossed my legs over his, and held his wrists straightjacket-style. The nurse used her palms as a vice to steady Martin’s head. Martin screamed “NOOOOOO!” The doctor put the hollow cone in place and deftly, immediately, extracted the pink thing. He hadn’t lied: Once we had Martin still, the procedure took less than three seconds.

Martin stopped screaming immediately. His body relaxed. He studied the pink thing now in the doctor’s hand. Then he said, “That didn’t hurt at all. I guess it was just my anxiety making me scared for no reason.”

What kid is this? I asked myself. Admitting he’d been wrong? Musing on the role his anxiety played? Holy self-awareness.

That was in September. Since then:

>He asked me if I could send something to school for him to chew on instead of his pencil eraser, because he feels like he needs to chew but doesn’t want to keep ruining pencils. (I rummaged through a kitchen junk-drawer and found a silicon pencil-topper.)

>When I asked him why he was jumping in the living room one afternoon—jumping and hand-flapping are rare behaviors nowadays—he replied, “I have some extra energy that I want to get out so I can stand still when I go to taekwondo.”

>While he still won’t admit to being tired, ever, he will make comments like, “I really don’t think I should be up this late,” or, “Maybe I don’t need to read before bed tonight.”

He even said to me, before Christmas, “Mommy, do you remember when I used to be real shy and have trouble talking to people? That’s getting better. Now I can talk to people.”

In the seven years since he was diagnosed, Adrian and I have never told Martin that he has, or had, autism. I guess maybe we’re going to call his spectrum disorder “shyness.” I can live with that, at least for now.

So we’re getting a lot more self-awareness. With self-awareness, on the other hand, comes awareness of the challenges that still distinguish Martin from his peers. He asked to reduce his services at school (physical, occupational, and speech therapy, plus resource room) because he dislikes being pulled so often from the classroom. Then he acknowledged, “I guess I have to keep going to OT because my handwriting still isn’t as good as the other kids’.” He wants to join the school band next year, playing either trombone or percussion. He asked, “Mommy, what if next year the band teacher kicks me out because I can’t concentrate?”

I’m very thankful that Martin is suffering less anxiety these days and has better emotional control. The Friday before Christmas was belt testing at taekwondo. Most of Martin’s friends (as always, I use “friends” loosely) from his green-belt class—the kids with whom he achieved green belt together in September—were awarded blue belts. Although he has attended more practices than any of those friends, Martin was not eligible to test for blue belt, because he’s had trouble mastering the new forms and doesn’t have the third stripe on his green belt yet. Adrian took Martin to taekwondo the next afternoon, and I warned him that Martin might become upset or even have a meltdown when he saw his friends with their new blue belts. (The Saturday class is combined orange, green, and blue belts.) But he didn’t. According to Adrian, Martin became upset when he realized I’d forgotten to pack his green belt (way to go, me!), calmed down as soon as the dojang lent him a belt for the day, and never said a word about missing the blue-belt test.

It was September when Dr. E spotted the pink thing in Martin’s ear and sent us to the ENT specialist. In November we had another appointment with Dr. E. That morning, Martin said, “Dr. E won’t find any pink thing in my ear today!” When Dr. E went to look in his ear, Martin said, “Dr. E, you won’t find any pink thing in my ear today!” So I couldn’t believe my ears when Dr. E said he saw a pink object in Martin’s ear. Plainly, Martin thought he was being funny and had shoved something in his ear for Dr. E to find. Back to the ENT specialist we went. This time the object proved more difficult to dislodge, and Martin had to hold himself still while the doctor threaded a noisy vacuum tube into the ear canal. Martin did beautifully. Not a peep during the 20-to-30 seconds the doctor needed to extract what appeared to be a chunk of pencil eraser.

Martin gave me various stories about how the eraser entered his ear, ranging from “no idea” to “I had my head resting sideways on my desk while other students were throwing erasers around.”

Increased self-awareness—yes. Increased maturity—not so much.