Category Archives: Mistakes

Target

Posted on by findingmykid
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This happens:

Martin enters our house, sees me in the kitchen, and without my saying a word or any other provocation, immediately trips into a puddle of anxiety. He asks what’s for dinner, then complains about what’s for dinner, says what he wants instead. If vegetables are involved, he asks if other kids eat vegetables and why he’s not like other kids. He jumps. He lists activities in which, he thinks, I won’t let him participate: Can I go to the taekwondo picnic without a grown-up? Can I ride my bicycle to the Stop & Shop? He makes demands and contradicts them: Can I have more than 30 minutes of screen time? No! No screen time! Mommy, no screen time today! Near tears, or in tears, he flees the kitchen and throws himself on the sofa, spewing nonsense.

Three days ago, Martin entered the house to find me prepping his favorite meal—“pizza bar,” in which he gets a pizza crust, sauce, Daiya cheese, and his specified toppings (pineapple, black olives, artichoke hearts, and anchovies) to assemble and bake as he likes—and staged an anxiety attack because I was using Nature’s Promise organic pizza sauce, not Poblano Farmsbrand.

I’ve tasted the two sauces. I’m certain if he hadn’t seen the jar he wouldn’t be able to distinguish the Poblano Farms from Nature’s Promise.

When these meltdowns happen, Adrian or my brother Eddie, having entered the house behind Martin, watches the whole performance, dumbfounded. Once Martin has adjourned to the sofa, Adrian or Eddie says something like, “I don’t get it. He was just fine until we entered the house.”

These events happen, and happen, and happen again.

Martin has severe anxiety, and I, his mother, have become the locus of that anxiety. This reality is difficult for me, and painful. It’s difficult for me because I, too, am prone to anxiety, much more than Adrian or Eddie. As Martin becomes upset and nervous, so do I, which despite my best efforts to hide, Martin detects and incorporates into his own mood. We spiral. It’s painful for me because, even though I know Martin’s anxiety is generalized and not tied to the stimulant that provokes the meltdown, these incidents feel like an attack on me.

As to why I am the target of Martin’s anxiety, my theory has long been that Martin perceives me as the arbiter of limitations on him, especially food. I am the one who sees the entire world in terms of Martin’s allergies; Adrian knows, for example, that Martin is allergic to all forms of dairy, but he still calls me with panicked questions like, “Does chocolate have milk?” I am the one who has done the research on organic versus non-GMO versus “all natural,” who studies food dyes and additives, who says thanks but no thanks when a well-meaning host offers to grill Martin’s turkey burger on aluminum foil to protect it from beef juices. Adrian, along with everyone else who supervises Martin, tends to say, “I’m not sure about that. We’d better check with Mommy.”

What’s worse, Martin perceives me as an arbitrary arbiter of these limitations on him, with good reason. I have loosened the strictures on corn, refined sugar, soy, and a few others. I’ve done so because (1) Martin gets to me with his constant whining, crying, and preemptive anxiety about food (see above: “I, too, am prone to anxiety”), and (2) I genuinely feel bad for Martin and want him to be able to participate to the fullest extent possible in what his peers are doing, and much of the time, what his peers are doing is eating a bunch of crap (which I say in a loving, non-judgmental way).

I’ve tried to make Martin the arbiter of his own food choices. I created a chart with four columns labeled foods I never eat(this column comprised only gluten and his food allergies), foods I try to avoid, foods I eat sparingly (“Mommy, what’s ‘sparingly’?”), and foods I eat as much as I want. My idea was to turn decision-making over to Martin, with just enough supervision to know what he was up to and intervene if “sparingly” became “once an hour.” But the chart itself morphed into an anxiety source, as Martin melted down over details like whether rice is “sparing” or “unlimited,” and how he should tell if vegetables are genetically modified (“try to avoid”) or organic (“as much as I want”). For all the progress he’s made, Martin still wants bright-line rules and certainty, and also wants those lines to fall exactly in the position that accommodates his preferences. I can’t always make that possible for him.

Recently, a friend proffered an alternative explanation as to why Martin’s anxiety targets me: I’m the one Martin trusts most, so he allows himself to release when I’m present. The meltdown Martin had last Wednesday supports this theory. He’d been out with my brother Eddie and “doing fine.” Upon arriving home and seeing me, he started complaining about his class photo, from last October. All the other kids had their eyes open and nice smiles, except Martin. The photographer picked the shot with Martin’s eyes closed and an awkward grimace. (In defense of the photographer, it is very hard to catch a decent shot of Martin.) From the class photo, Martin moved to worrying about when he almost arrived late the day in March he was to say the morning Pledge of Allegiance over the loudspeaker. Then, becoming more upset, he remembered how, first semester, the kids had to wait in the cafeteria for chess club instead of going out to play, even though school ended at 2:25 and chess club didn’t start until 3:00. By the time Martin started perseverating about his mid-year fixation with the little girl Nicole, he was in full meltdown.

That sequence, from seeing me to meltdown, took less than three minutes. Clearly, Martin had walked through the door cocked and locked, ready to fire. It took me about 20 minutes of sitting with him, calming him, and coaxing him with questions to get him to admit the real issue: It had been the last day of school, and Martin felt terrified about not seeing his school friends over the summer. I understood where he was coming from. I remember, even as a young adult, fearing the end of law school or of temporary employment because I would lose access to people whose company I enjoyed, but whom I would not see independently. Martin’s remaining social deficits mean he doesn’t get playdate invitations. The kids who play the role of friends during school recess would be likely unavailable to do the same over the summer.

Once we’d sorted out the true cause of the meltdown, Martin became apologetic. He didn’t mean to shout angry things at me, he said. He’d been like a volcano ready to explode, and the last day of school brought up bad memories in his head. So indeed, maybe he’d melted down at me because I was the safe space to do so.

The safe space who controls his life. That’s me.

Dropping Him off, Into the Unknown

Posted on by findingmykid
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Tough few days here, in the process of Finding My Kid.

In his life, Martin has had three “drop-off” play dates. The first was more than a year ago, when I left him with one of my friends who has a typically developing son Martin’s age. Though my friend generously spared me the details of the 90-minute play date, I could tell at pick-up that Martin had played alone (and fussily) and ignored her son, who ended up resenting Martin and teasing him at school. The second drop-off play date was a couple months ago, when I left Martin at his friend Jonathan’s house. Jonathan, who has some special needs, is the oldest of four boys (I mentioned them last year), and two of his younger brothers had friends over also. I’m not sure how many kids were in the house. Maybe eight or nine. A bunch of adults were there, too, watching the Winter Olympics. Martin disappeared immediately upstairs with Jonathan. I had no trouble leaving; Jonathan’s mom knows Martin well, and with her houseful of boys, I think she could handle just about anything short of a nuclear explosion. Whatever Martin did while there, he was happy when I returned, and Jonathan was happy, and all was well.

Last Friday was the third drop-off play date. Martin was invited to go after school to the home of Manuel, his school chum who, despite some challenges, is more or less typically developing. Manuel’s grandmother and mother both urged me to let Martin stay alone. I did so, albeit with reservations that they might not understand the extent of Martin’s challenges. I left and texted my friend Stacey:

I just let Martin go to a drop-off play date and now I’m too nervous to do anything.

I don’t want to get back and find out that he freaked or had a meltdown or something, ugh.

I’m seriously hovering a few blocks away in my car in case I get a text.

As it turned out, my reservations were well-founded. Although the grandmother (who supervised) was kind and generous with her words, Manuel began complaining as soon as I returned to retrieve Martin. Manuel said Martin hadn’t listened. Martin had hit him with the sword. Martin was running into the street. Martin didn’t want to play his games. And so on. And so forth. I could see for myself that Martin was hyperactive and agitated. I thanked Manuel and his grandmother for the play date and hustled Martin to the car. How did he think the play date went? I asked. So-so, he responded. Some good and some bad.

From Manuel’s perspective, I have to believe, the play date was more bad than good. We didn’t see Manuel again until Monday at school pick-up, when he rejected Martin’s overtures to play, for which his grandmother was apologetic. Tuesday, Martin appeared sad when I picked him up from school. (At that time, Manuel was trying to play handball with the rowdier boys, an activity in which Martin shows no interest.) Martin refused to disclose anything that might be making him sad. More than an hour later, when I was dropping him at church for Kids’ Klub, he said, “Why didn’t anyone want to play with me at recess?” I asked a few questions and learned that Manuel, Lucas, and the two classmates who usually talk Minecraft with him all said no when Martin asked them to play.

Manuel liked playing with Martin before Friday afternoon. Thereafter, not so much.

If I want to appease myself, I have plenty reasons why the Friday play date went poorly. For example:

>    Manuel’s grandmother had invited Martin specifically to play video games. Martin was so much looking forward to the video games; Manuel has a gaming system that Martin thinks he might want for his birthday, and video games are one arena in which Martin feels comfortable with—equal to?—other kids. As it turns out, the family is half-packed to move, and some cable required for the video gaming system had gone missing. No video gaming occurred.

>    Martin expected to play with just Manuel. When he arrived, Manuel suggested that they follow his usual practice of meeting two other friends as they got off the school bus. Martin knows the other two boys and agreed readily to include them, and in the end they stayed only 15 minutes. Still, their presence created another change in plans.

>    Martin’s palate expander was falling out again. The darned thing was hanging, detached, on one side. Martin kept trying to reattach that side, and he could barely speak. The entire device finally detached during the play date.

>    Manuel is moving next month. Martin is full of anxiety about this. Anxiety, in Martin, can manifest as anything from confusion to silliness to defiance.

In the end, my excuses don’t matter much. The Friday event went poorly because Martin couldn’t manage to play well with others. We still have work to do on social skills.

Or do my excuses matter? How much mischief did the anxiety cause? Last night I met with Martin’s psychologist. I mentioned the play date debacle, and why I thought Martin might have had more trouble than usual. The psychologist said, “That explains these pictures he’s been creating.” She showed my two sheets. On the first, Martin had drawn a car driving away, with Manuel inside and Martin outside yelling, “Manuel!!!!!!!” On the second sheet, Martin had drawn the outline of Florida (where Manuel is moving), a car packed and ready to depart, and Martin and Manuel saying goodbye to each other.

I wish something could be easy for my kid. Anything at all.

Darling Little Obsessions

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At 8:30 Sunday morning, Martin was having a mini-meltdown. He danced awkwardly through the kitchen and family room, yelling, “No alterations! No, never! Mommy, is Daddy right? Can he make alterations? No, it’s thee scoops!”

The morning tantrum was prompted by sorbet. We planned to eat dinner at a restaurant Sunday evening. Nine hours before the event, Martin was already fixated on getting three scoops of sorbet. A sorbet order, he claimed, is three scoops. Last visit to the restaurant Adrian had “altered” the order and asked for Martin to receive just one. When Martin, at Sunday breakfast, demanded to know whether Adrian planned to alter that evening’s order, Adrian replied that Martin could ask for half-scoops of two different flavors, but it was better if he ate only one scoop total. And then Martin freaked.

Martin has two obsessions these days: food and iPad.

The food obsession worries me more, because (1) as opposed to an iPad fixation, food fixation is less common; and (2) its cause, at least in part, is the diet we follow for recovery. Martin is allergic to dairy and to red meat. He hasn’t had gluten in more than seven years. We avoid soy. Other than those restrictions, I currently let just about everything else slide when we are dining out, within reason. Martin is now wise enough to pin me down on these restrictions: “I can have anything but dairy and gluten, right?” “How much sugar can I have?” “Does gluten-free pasta have sugar? How much?” “Are French fries a treat?” He’s developed a give-me-an-inch-and-I-will-take-a-light-year approach to pushing boundaries. I made the mistake, last year, in an effort to harmonize a Sunday dinner, of allowing Martin to order a dish of sorbet for dessert. Martin immediately placed sorbet into his foods-I-can-eat column and fixated on whether sorbet is a “treat,” i.e., something he gets only in limited quantities versus something he can eat whenever. Fast forward to today: Within five minutes of awakening, routinely, he’s asking about whether and when he will get sorbet that day, the first of may food questions.

I overcompensate. I reason that the less Martin feels left out, the less he will fixate. The freezer in the school nurse’s office is stocked with GFCF cupcakes, donuts, and ice cream, in case of classroom party or event. Every Tuesday afternoon Martin shows up to church with a snack more desirable than the pretzels and cookies the others receive. I always keep supplies to conjure a GFCF pizza, on a moment’s notice. Sunday evening, at the restaurant, Adrian ordered key lime pie for dessert. (Adrian and I allow ourselves dessert only if Martin has an equally appealing option. He had his sorbet.) “What’s that? Can I eat that? Does it have gluten or dairy?” Martin asked, when the pie arrived. I replied, “That’s called key lime pie. This one has dairy, but would you like to try key lime pie that you can eat?” He said yes. I promptly rearranged my Monday afternoon schedule so that I could take two hours to prepare GFCF key lime pie. The policy letter I was engaged to write for work would have to wait. Like I said, I overcompensate.

Then there’s the iPad. Weekdays, Martin gets 30 minutes of iPad time, after homework is complete, and dammit, he’s going to make sure he gets that time. Weekends are tougher still. I try to limit the iPad to 60 minutes, but that means occupying him the remaining 12 hours he’s awake. Yes, of course I know that I’m supposed to let him be bored so that he’ll find creative ways to occupy himself. Thus far, however, the only way he’s found to occupy himself is to beg for the iPad and stage a tantrum if his wish goes unfulfilled.

I admire parents who draw the line and curb obsessive behavior by getting rid of the iPad altogether. I’m unwilling to follow their example, for two reasons. First, admittedly, I fear the weeks of meltdown and the impact on my life, which already lacks enough hours to accomplish my goals. There could be no trial period in an action like iPad removal; if we said we were getting the rid of the iPad but eventually relented and returned the device, Martin would never respect a parental decision again. Second, paradoxically, screen time is one way that Martin is able to connect to other kids. He’s made a couple school friends through Minecraft, and other games like Subway Surfers give him ready conversation topics when he finds a fellow player. He also uses the iPad to send messages to his cousin and to his uncle. I’ve decided I am okay with him having the device, with time limits. I do wish the iPad weren’t always on his mind whenever it’s not in his hands.

Martin got his three scoops of sorbet, Sunday evening. While Martin was visiting the bathroom, Adrian asked our server please to tell Martin that an order of sorbet comprises one scoop only. The server did that. Then he added: “And you, young man, may have as many orders as you’d like!” At that point, our dilemma was three scoops sorbet, or an in-restaurant meltdown (which would have been highly unusual, but Martin was having one heckuva bad day). We went with three scoops.

Then Martin accidentally broke a glass, and melted down anyway.

IMG_0444

The Remains of the D…essert. The recipe called for coconut cream, which I didn’t have. I substituted coconut butter, and the topping came out less smooth and more chunky. Nevertheless, my GFCF key lime pie was a hit.

We Feel Terrible That We’ve Done What We’ve Been Told Not To

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This morning I lost my temper with Martin. I’m not pleased about losing by temper, but it happened.

We were in the last stages of getting ready to leave for school—which for us, 90% of the mornings, means getting ready to be late for school. I had executed the morning routine well, and despite extreme dawdling during breakfast, we managed to reserve 20 minutes to get Martin dressed, hair-combed, teeth-brushed, and jacket-clad. He took eight minutes of that time to sit on the toilet and yell, “Privacy please!” every time I knocked. Five minutes or so were devoted to dodging my attempts to get him dressed and instead asking senseless “What if?” and “Would you want?” questions: What if you’re in a restaurant and the host takes your drink order but then the waiter brings you the drink? Would you want to eat at a restaurant like that? What if two hockey teams are playing each other and wearing the same uniform so you can’t tell them apart? Would you want to watch a game like that? More time was wasted as Martin grabbed his freshly cleaned glasses by the lenses, so that I had to return to the kitchen for another lens-cleaning wipe. When I asked him to brush his teeth, he was chit-chatting instead of paying attention, so he went to the sink and washed his hands. Then he insisted on another trip to the toilet, after which he returned to the sink with his pants around his ankles. When I told him, “Pull up your pants so we can leave,” he heard only “pants” and so, without further thought, used his feet to take off the pants.

That’s when I lost it.

“Martin!” I barked. “You have got to pay attention! Sometimes you must listen! We cannot be late to school every single day!”

He laughed, which he does when he’s nervous, or overwhelmed.

I grabbed the pants off the floor and thrust them into his arms. “Put on these pants! We have got to leave!”

He clutched the pants and averted his eyes. We had passed the point of meaningful communication.

Realizing that I needed to cool down, I left Martin in the bathroom and returned to the kitchen.

Now I was the one overwhelmed.

I felt agitation. A lot of agitation.

I’ve written before that, when we are late, the problem is me. That’s true. But on this occasion—if I may plead my case—I had done everything right. I got up on time, 5:40 a.m. Adrian’s bento boxes were prepared last night; all I needed to do this morning was heat his lentils. Martin’s veggie-meatballs (turkey) were ready last night, too; all I needed to do this morning was pop them in the oven. Beans were in the coffee maker, for Adrian’s coffee; all I needed to do was add water. My Bodum pot stood ready, with Hobee’s tea already in the steel basket (I’m off coffee, stupid heartburn!); all I needed to do was add boiling water. Even Martin’s breakfast was half-prepared; I cleaned and grated the sweet potatoes for his fritters last night, and packed them in ice water. Martin was done with breakfast and in the bathroom at 7:50 a.m., 20 minutes before our scheduled 8:10 a.m. departure.

Despite all that preparation, we were going to be late for school. Again.

It took only a few deep breaths before my agitation gave way to disappointment, in myself, for having lost my temper.

Two memories came to mind.

First, a passage from Naoki Higashida’s wonderful book The Reason I Jump. The teenage author, who is mostly non-verbal and uses a keypad to communicate, writes (of himself and others with autism):

Me, I’m always being told off for doing the same old things. It may look as if we’re being bad out of naughtiness, but honestly, we’re not. When we’re being told off, we feel terrible that we’ve done what we’ve been told not to. But when the chance comes once more, we’ve pretty much forgotten about the last time and we just get carried away yet again. . . . But please, whatever you do, don’t give up on us. We need your help.

Second, an experience on a New York City subway. One night, after a theater date with friends, Adrian and I were on the subway after midnight, seated across from a woman and a toddler. This story is not meant to judge the adult (mother?) for traveling after midnight with a toddler. She may well have left a second-shift job and retrieved the girl from a sitter, or tended to a family emergency without notice. The little girl was obviously exhausted. She held herself together for two or three stops, then started to cry. The woman said, “Cut it out!” Her tone was menacing. The toddler stopped the tears momentarily, whimpered, and started crying again. The woman grabbed and shook the girl’s chin and yelled, “You ain’t got nothing to cry about.” Finally she threatened to slap the girl. Without saying anything, I stood up. I don’t know what I meant by standing up, maybe just to suggest that other adults were present and were prepared to intervene. The woman scowled and fell silent. Somehow, the little girl stopped crying, and the moment passed.

My heart went out to the girl. “She can’t help it!” I wanted to say. I should have said. What toddler could be awake after midnight and control her behavior?

That’s Naoki Higashida’s point, too, I gather: What child with autism (or in our case now, ADHD) can conform his behavior to neurotypical specifications?

The fault that we are late is Martin’s, I thought, but it isn’t his fault that he’s at fault.

Does that even make sense?

I returned to the bathroom and apologized for raising my voice. I was frustrated at being late, I said. I wasn’t angry at him. I knew he was trying. I was glad his pants were on again. How about if I helped him tie his sneakers?

Martin sought two or three assurances that I wasn’t angry. I gave the assurances.

We were late to school again. The world didn’t end.

Time to Tell

Posted on by findingmykid
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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.

Meat Allergy, But Maybe No Alpha-Gal? Well, Good. I Should Be the Only Alpha-Gal for My Alpha-Kid

Posted on by findingmykid
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Back in January, I wrote about Martin reacting to beef. I speculated that his beef allergy was related to his Lyme disease, and specifically to Alpha-Gal (galactose-alpha-1,3-galactose), a sugar produced in the gut of the Lone Star tick (and possibly other ticks?) that can be transmitted to a human through a bite, causing the human to react to the Alpha-Gal also found in red meat.

The first time Martin showed allergy to any meat other than beef, we were at a restaurant in California. He ordered a bison patty. Before he’d eaten half, the rash appeared around his mouth and spread down his chin and onto his neck, all predominantly on the right side—exactly what happens when he eats beef. I summoned the manager and insisted that the staff must have substituted a beef patty for the bison, or cooked the bison on the same surface as beef. The manager was equally insistent that no such thing had happened. I’m glad I didn’t make too big a deal over the incident, because later, when Martin had the same reaction to bison carefully prepared at home, I realized what actually was going on: His allergy was no longer limited to beef. Since then, Martin has developed a rash after eating elk and venison, too. Most recently, twice, wild boar triggered a histamine reaction in the form of watery eyes and a runny, itchy nose.

Alpha-Gal allergies, which appear to originate exclusively or near-exclusively from tick bites, are increasing rapidly across the Eastern United States. The allergy was first identified in the Southeast. Since then, reports have arisen up the Midwest corridor and in the Northeast. Indeed, one of my meat purveyors, located in the Northeast, kindly sent me a list he’d developed of his products that do and do not contain Alpha-Gal. “We’re getting the question more and more,” he said. “Seems like a lot of people have the allergy, so I made this list.”

Nevertheless, for two reasons, I’m rethinking whether the Alpha-Gal carbohydrate in fact is triggering Martin’s allergy.

First, when he eats red meat, Martin develops a rash immediately. All studies and informational sites I’ve reviewed indicate that an Alpha-Gal allergic reaction to eating mammalian meat is a delayed reaction, typically manifesting three-to-six hours after ingestion.

(By contrast, an Alpha-Gal reaction tends to be immediate when the body encounters the carbohydrate through injection or infusion, as opposed to ingestion. For example, exposure to intravenous cetuximab, which is a monoclonal antibody specific to epidermal growth factor receptor (EGFR) and used in cancer treatment, has caused immediate reaction because it contains Alpha-Gal. And even without an allergy per se, Alpha-gal is the likely culprit when porcine bioprostheses, utilized in cardiac surgery, cause xenograft immune response.)

Second, Martin reacts differently to wild boar than to beef, bison, venison, or elk. The higher-myoglobin meats cause a rash—red blotches sometimes accompanied by raised patches—that doesn’t seem to cause Martin discomfort. Wild boar, however, makes his eyes water and then become puffy (most likely from his rubbing them), and makes his nose bother him. Since the Alpha-Gal carbohydrate is in the same form in all these meats (I think?), it seems counterintuitive that Martin’s reaction would vary.

So I am investigating whether Martin might have developed a meat allergy other than Alpha-Gal. The investigation has proved challenging, because I’ve found almost no information about meat allergies other than Alpha-Gal, other than statements that such allergies exist but are rare. There are tests advertised to detect meat allergy (I’ve never looked into them and express no opinion on whether they work). It seems that, if the Alpha-Gal carbohydrate is not to blame, then the person is probably reacting to specific proteins.

As to pork, and specifically Martin’s teary-eyed reaction to wild boar meat instead of higher-myoglobin meats, there is something called pork-cat syndrome. (Seriously. “Pork-cat syndrome.” I’m not making this up.) Persons with respiratory allergies to cat albumin (a protein made by the liver) may also demonstrate allergy to pork, given the structural similarities between cat and pig/boar albumin. Two years ago Martin developed a respiratory allergy to cats, though I’m not sure whether he reacts to cat albumin or to Fel d 1, which is the more common cat allergen. Maybe “pork-cat syndrome”—it’s hard for me even to type the name without laughing—explains the boar reaction.

Then there was the last day of school, in June. Here’s something I wrote in my July 4 post about medical cannabis:

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.

. . . 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.

Now I’m wondering whether the culprit was the boar, plain and simple.

When I wrote the post in January about Martin’s beef allergy and the possible indictment of Alpha-Gal, I fretted that the allergy could spread from beef to other red meats. That’s happened. I’m on to worrying that if the allergy is something other than Alpha-Gal, it could spread beyond red meats to poultry as well.

Here’s another thing: I’m a long-time vegan who felt compelled to allow her son to eat meat in order to heal his digestive issues. Let’s spend a few minutes contemplating the irony of my son developing an apparent allergy to meat.

Knife

Posted on by findingmykid
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We knew when we put Martin in public school that socializing would be problem.

It has been.

Academics: Not a problem.

Speech/language: Fading as a problem, except for social/pragmatic usage.

Behavior: Sometimes a problem (the silly, detox-y days), but his teacher handles the behavior masterfully.

Socializing: Problem alert.

Last month, in the post titled, “I’m the Issue,” I wrote about my concerns for Martin’s self-esteem.

At night, when the reading is done and the teeth are brushed and Martin and his stuffed Minions are tucked under organic linens, I sit on his bed to tell him that he’s a great kid and very, very loved. If he’s having anxiety, I make him repeat: “I am safe. My mom is in the house. My dad is in the house. My mom and dad will keep me safe, and I will keep my Minions safe. I can sleep well tonight.” Sometimes we talk about the day he’s had, or the next day he will have.

“Is it okay,” he asked me two weeks ago, during this intimate time, “if people don’t like me?”

I said, “Of course it is. Everyone has some people who don’t like him or her. There are people who don’t like me. There are people who don’t like Daddy. You can’t make everyone like you.”

“But is it okay,” my beautiful eight-year-old son continued, “if no one likes me?”

I am a failure.

Expectations

Posted on by findingmykid
3

We went skiing again, two weeks ago. I feel so incredibly fortunate to have had two separate ski weeks this year. This time it wasn’t Park City, but Beaver Creek. Adrian has skied Beaver Creek before; for me and Martin, this time was the first.

When we’re at Park City, Martin takes his lessons through the National Ability Center, which you know I love. The instructors are trained and experienced in giving adaptive lessons, they got Martin skiing for the first time, and I’ve seen them perform miracles when it comes to getting more severely affected children and teens sliding down the mountain.

At Beaver Creek, we booked a full week of half-day lessons through the in-house adaptive program. The Beaver Creek adaptive lessons were discounted from standard one-on-one lessons but still quite expensive.

When Martin was doing skating lessons in the hope—ahem, in my hope—that he could play hockey, his instructor was not trained in working with special-needs kids. He was patient, maybe too patient, and no expert at motivating Martin. This may be my own unnecessary fear, but at some point I was unsure whether the instructor even enjoyed working with Martin enough to push him. Martin may not have got as much from those skating lessons as he should have. I’ve had the same feeling about the music lessons—first his piano lessons and now his trombone lessons, both with “regular” instructors. Sometimes those who don’t work regularly with impaired children seem to have pretty low expectations of what they can accomplish.

So I was uneasy Monday morning when I discovered that Martin’s instructor, Steve—Martin was assigned the same guy for the whole week—was not a full-time adaptive instructor and instead taught mostly standard lessons. Steve had called me the night before, to go over the notes in Martin’s file, and asked questions about what to expect. Nevertheless, I feared he might not know how to handle Martin’s shortcomings like attention, coordination, or frustration tolerance. I worried whether he would value Martin’s strengths, like curiosity, and perseverance when motivated.

Those fears were relieved as soon as I retrieved Martin after Monday’s lesson. Martin was a bundle of enthusiasm as he whispered dramatically about the secret path they’d skied through trees and then demonstrated how they howled like wolves in the woods. Steve talked about Martin as if he were any kid: His parallel stance was improving and he wasn’t wedging to slow anymore, but his hockey stop wasn’t 100%, either. They’d crossed several hillsides to work on keeping skis together. When allowed to ski independently Martin was still straight-lining instead of turning. He’s eight, the instructor said. That’s what eight-year-olds do.

I have a long history of bristling when I hear “all kids do that.” On this occasion, it didn’t bother me. To the contrary, by Wednesday, after three lessons, I was convinced that Martin was improving faster with Steve than with any previous instructor, and if Steve was bothered by Martin’s shortcomings, he wasn’t dwelling on them. On Friday, during his final lesson, Martin skied his first black diamond.

The Steve situation, i.e., Martin doing better with a standard instructor than an adaptive instructor, engenders where we are now. Martin has improved again since our post-Christmas dip. At times he seems close to typical. And that raises a whole new crop of problems. Back when I couldn’t get Martin to respond to a question and trembled at the constant meltdowns, taking too long to get ready for taekwondo class would not have bothered me, at least not much. When he couldn’t hold a pencil, or when we still worried about cognitive impairment, I probably would have delighted that he was doing math homework, not fretted that he was dallying.

The expectations of Martin have become higher, and sometimes he rises to the occasion, as he did with Steve. On the other hand, I find more reasons to be frustrated when these expectations aren’t met. Which, when you think about it, is unreasonable indeed.

Here we sit, neither typical nor impaired enough to—to make a big deal out of it? I’m friendly with a taekwondo mother whose son has attention issues. Her son’s issues are slight, and always have been. She’s so skilled at rolling with the punches: accounting for her son’s tardiness, giving him “good attention” reminders, supporting him socially, monitoring his after-school activities to make sure they are meeting his needs. I’m not so good at all that, yet. I’ve spent so many years putting Martin’s shoes on for him and helping him eat that I haven’t developed the skill set to empower his independence.

Time to raise other expectations. Of me.

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Adrian and Martin, heading up the mountain.

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Martin, enjoying a fountain view, after a long day of skiing.

I’m the Issue

Posted on by findingmykid
8

Back in December, I found myself volunteering at Martin’s class Chanukah party. I read The Runaway Latkes to the class, served latkes—I’d brought Martin’s from home—, and helped Martin’s desk cluster play Chanukah bingo. I also facilitated a dreidl game. Martin played dreidl without incident, but another boy cried or complained every time he had to surrender chips, and finally refused to play any longer, instead yelling, “I’m a sore loser! I’m a sore loser!” I was reminded of when the behaviorist told me, “Martin is not the behavior problem in his classroom.” Overall, the morning went smoothly for Martin, and I felt optimistic.

While I and the other parent volunteers were packing to leave, the teacher called the kids to the rug for another story time. The kids were fussing and settling, and the teacher said above the murmur, “Children! This book is scary! You might want to snuggle up with a good friend!” Everyone squealed and began linking arms into groups of two or three. Tristan immediately grabbed Spencer. Those are two boys I know. Tristan’s mom was born in the same country as Adrian. We have done play dates with Spencer (on a parent-organized, not child-initiated, basis). Martin gravitated to them also, and sat himself very close to Tristan. A second later, Tristan pushed Martin away, and even from the classroom doorway, I heard Martin ask, “Why not? Why can’t I be?” I don’t know exactly what Tristan said to Martin, but given that it followed “. . . snuggle up with a good friend,” I can guess. When I left, Martin was sitting alone, two feet from Tristan and Spencer, listening as the teacher began the scary story.

I worry so much about Martin’s self-esteem. It’s probably what I worry about the most, even more than his attention deficit and immaturity. I wonder how many times per day his self-esteem endures hits like Tristan pushing him away and saying he’s not a friend. The ten or so kids other than Martin at his morning bus stop are all girls, except a boy named Nathan. One of the mothers is pregnant with twins and just found out she’s having a boy and a girl. When she told the bus-stop crowd, Nathan’s mom said, “Oh my gosh, Nathan, are you happy? Finally another boy around the street!” She said this while Martin was standing next to her. Perhaps she confused social challenges with hearing, understanding, inferring.

Seeing the way the world treats Martin has caused me to do some hard reflecting, again, on the way I treat Martin, and how I might also be injuring his self-esteem. Multiple times each day, I become frustrated with Martin for behaviors that are likely outside his control. On any given morning, I might say the following:

-“Martin, why did you spill all the juice? Weren’t you being careful? This is expensive juice.”

-“Martin, I told you to finish eating while I got dressed. You haven’t eaten even one single bite!”

-“Martin, why can’t you just put your shoes on? Feet. Shoes. It isn’t hard.”

-“Martin, we are going to miss the bus! Listen! Pay attention!”

-“Well, that’s it. We’re late. Again.”

Or take this very afternoon, a Monday. I’m going to be honest here, entirely honest, even if doing so brings me to tears while I’m writing: I have been frustrated with Martin since the minute he returned from school. Everything was wrong: Last night I slept only three hours, because I was working on a memo. This afternoon I ended up doing more office tasks than I planned, and my lunch date was more than half an hour late, so I still had to make dinner once Martin was at home. Let me add—Martin had a fantastic weekend. He chatted conversationally, he had no meltdowns, he focused at taekwondo class. So I expected a fantastic today. I knew today would rock. And then it didn’t. Martin cried and complained his way through 40 minutes of homework (worksheets that should have taken no more than 10 minutes), and he still wasn’t done, not even close, when I called him to get ready for taekwondo. I reserved 20 minutes to get us out the door. Twenty minutes to put on a taekwondo uniform and sneakers. And yet we were late. Like junk expands to fill a basement, Martin’s needs expand to overflow whatever time he’s allotted.

My role in all this? I’ve spent the entire afternoon being unreasonable. I’ve told Martin to stop complaining, I’ve grown frustrated, I’ve blamed him for our lateness. I’ve told him to act like an eight-year-old instead of a baby. Once or twice I’ve raised my voice. Constantly I’ve thought, “I would like a glass of wine,” and responded to myself, “A glass of wine will not solve anything,” and then argued with myself, “I think it would.”

My attitude, this afternoon and many mornings, is problematic for two reasons. First, it is unfair unfair to Martin. It’s not that Martin “isn’t being careful”—it’s that his ADHD and lingering coordination issues make him clumsy and distracted. It’s not that Martin “isn’t hurrying”—he lacks the ability to focus. It’s not that Martin is “ignoring me”—listening and paying attention go to the very heart of his disorder. To be sure, some of his conduct may be behavioral. But most of it is not, and it upsets him to be reminded of his shortcomings.

Second, my attitude pretends like I’m not the issue.

If Martin is spilling juice, I am the issue. The juice should be in a safer spot, and in a spill-proof cup.

If Martin isn’t finishing breakfast while I’m getting dressed, I am the issue. I need to get dressed before Martin eats so that I can supervise him.

If we are not getting out of the house on time, I am the issue. If 20 minutes is insufficient time to prepare, then somehow I need (1) to find more time and (2) to organize so that I have nothing to do except shepherd Martin’s preparation. One might argue that Martin needs to be developing more independence; clearly, however, the “independent Martin” strategy is failing at this time. Maybe I can leave one, and only one, task for solo performance: teeth brushing, or bag packing, or sneaker tying. For now, I need to “scaffold” massively (think “build extrastructure”) and withdraw support as Martin’s attending improves.

The truth is—and I think most biomed parents will agree with this—it is very frustrating to spend almost every waking moment working toward recovery and still get hit with waves of perseveration. Still never get out of the house on time. Still wonder why the child never listens. Still endure moments of hopelessness.

But that truth doesn’t excuse me from acting like the grown-up in this relationship.

Epilogue

I wrote this post yesterday, Monday. When Adrian arrived home, I said, “It’s been an afternoon. Will you pour me a glass of white wine?” He noted that the only white wine in the house was a bottle of questionable quality that the pool company had dropped off before Christmas. I told him to proceed. I drank two glasses. I woke at 3:30 am with a headache. I took ibuprofen and went back to sleep, propped on pillows, then managed to oversleep until 6:00 am.

Despite being rushed, I worked swiftly and organized the morning well. Martin cooperated more than yesterday. I was so proud of us when we were ready for the school bus three minutes early.

After Martin departed, I realized I’d forgotten his after-breakfast supplements.

He arrived home with a report saying he’d needed an unusual amount of prompting during the school day, and had refused to participate in Valentine’s activities. Now he’s in taekwondo again, and instead of participating, he’s jumping.

Still, the grown-up in the relationship feels okay. Must be a sleep thing.

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Martin, at Chicago’s Adler Planetarium. He’s not the issue.

Opposite Direction

Posted on by findingmykid
9

We had that one golden week, immediately after I switched Martin to low-salicylate diet.

The next week wasn’t so good.

This week isn’t so good.

You know what I mean by “not so good”: lots of silliness, little concentration, some meltdowns.

We are still doing low-sal.

I can’t identify any environmental changes since golden week.

What is different is that we are, again, increasing the anti-microbials in Martin’s protocol, trying to reach what his doctor considers full dose.

Martin’s system is sensitive and reactive. I begin to doubt whether we will ever make it to full dose.

I’m going to try an experiment, this week: I’m going to reference Martin’s protocol sheets (I print them at home and keep them all, of course) from our ski week and from the golden week. Whatever dose of each antimicrobial Martin had those weeks, he shall have this week.

I’m writing this at Martin’s taekwondo class. I’m watching him focus on nothing. I’m looking at a kid with half the attention span he had two weeks ago.

And so for a little while, I don’t care whether we are working to reach full dose of antimicrobials.

I just want another golden week.