Dropping Him off, Into the Unknown

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

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

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 women 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

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.

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

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

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

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.

img_5675

Adrian and Martin, heading up the mountain.

img_5701

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