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.

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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.

On Working Whilst Biomed-ing, and Yes, I Just Made a Verb Out of Biomed

Last month, in response an earlier post titled “Current Issues,” I received this comment from a reader:

Long due note:

I’m a regular here. We are sailing the same long road with my daughter who is three-and-a-half. Your overwhelm me and encourage at the same time. I feel like you are a super mom to be doing all that you do. I’m shattered most of the time and come back to you for hope and guidance. I’m very curious to know where you started. I have gone back and searched the blog and couldn’t find a journey type of blog. Can you write about this when you can? When did you get diagnosed, what were your earliest challenges? Where did he stand verbally when he was diagnosed? I know every kid with autism is different, but I see Martin as hope and would like to get some perspective on where he started to ensure I’m keeping my recovery stories aligned.

One another point of interest is how has going back to work been? I took a brief break immediately after diagnosis and came back. I absolutely love my job and the benefits that come with it to enable us in this journey but guilty nevertheless for not making the choice to stay back.

Once again, to me you are the perfect mom I wish my daughter had. Some day I will get there.

I responded:

“You . . . encourage me at the same time.” Thank you so much for this note. I write this blog to encourage others, as well as to provide the truth about when recovery isn’t going the way I envisioned it should. If at any point I’ve come off as “the perfect mom,” I apologize. I am far from that. Like you, I’m struggling to find my way along this path. I have written from time to time about where Martin started, but for you I will put together a post about exactly where we were when he was diagnosed. Just last week, I happened to be cleaning my office and ended up reviewing his heart-wrenching initial neurodevelopmental report, so I will start from there.

This kind reader is getting two posts in response to her comment. The description of where Martin started requires more time, because in order to make sure I get it right, I want to review not only my contemporaneous notes of Martin’s behavior around diagnosis, but also those first neurodevelopmental evaluations. In this post, I will answer her easier question, “How has going back to work been?”

When Martin was born, I was not working in paid employment; I was on a break from my job with a large law firm in order to complete my MFA in fiction writing. I finished that degree and then returned to the large law firm, albeit part-time, in late summer 2009, when Martin was 14 months old. Primarily, I was able to work from home. (Despite the bad reputation of large, competitive law firms, mine was, and remained, accommodating to my scheduling needs and desire to work remotely. For that, I am grateful.)

By the following summer, when Martin turned two, Adrian and I realized that his behavior was “off” and trending farther from the norm. We received a tentative autism diagnosis in September 2010. The diagnosis was made official in April 2011, after two months of neuropsych evaluation. By that time, we had already started biomed. I continued working for the large law firm, frequently exhausted, until January 2012, when I finally quit in order to focus on Martin’s recovery.

I stayed away from paid employment until October 2014, when I switched direction entirely and took a part-time gig litigating for an upstart, boutique law firm. That’s still where I’m working today. The scrappy new venture suits me (current me) much better than the white-shoe firm where I spent 13 years defending large corporations. Our little collection of lawyers represents non-profit organizations and consumers, in the areas of food safety (including pesticide residue), protection of farmed animals, greenwashing, and keeping toxins out of household products. My hours are, generally, flexible, and most of my work can be done from home; I commute only once or twice per week to our offices in Brooklyn. On those days, a caregiver picks Martin up from school and handles after-school activities, dinner, supplements/antimicrobials/etc., and bedtime. Also, Adrian and I employ a housekeeper, who comes for a couple hours each weekday morning to take care of laundry, the kitchen, and cleaning.

Despite those facts, I regret to inform you—here, I neither request nor think I deserve sympathy—that I have reached the depressing conclusion that it is not possible to do complete biomed and also work full-time, or half-time, or any more than minimal part-time. At least it is not possible for me, at 45 years old and needing the sleep that I lacked for the first years of Martin’s recovery. Although I have household help and childcare assistance, the tasks that still fall upon me include sourcing (in some cases, growing) clean food, cooking, baking snacks and desserts, trial-and-error with Martin’s diet, ordering and tracking and administering supplements and antimicrobials, coordinating doctor appointments and recovery-focused activities, research, and (this I consider important) facilitating quality time for Adrian and Martin. Regarding Adrian and Martin, I like them to be able to go to the movies or go shopping or visit a restaurant together and feel as typical as possible. Preparation for these activities entails a lot of checking menus on-line and packing snacks and sending activities like books, etc. (No, Adrian does not help with these tasks. Read this post.)

On a school day, I get up at 5:40 to heat and package lunches, prepare breakfast, organize and administer pills and drops, and shepherd Martin’s snail-pace preparation for school. Martin’s after-school activities—which include taekwondo, chess club, music lessons, psychologist visits, social-skills play group, and neurofeedback—can feel all-consuming, even before adding homework, with which he needs guidance. I keep Martin busy, because he still doesn’t have enough friends for regular play dates, and when his hands are idle he’s mostly whining for his iPad. Martin’s schedule means that, unless someone else is handling after-school activities, I have time only for finishing up the last parts of dinner preparation. Any minutes remaining after Martin is in bed I dedicate to cleaning the kitchen and prepping for breakfast, baking snacks if we are running low, putting together Adrian’s lunch for the next day, and if I’m lucky, watching a show or the news with Adrian.

Given all that, unless someone else is on duty after school, I have exactly six hours “free” per day, the time between when I drop Martin off at school and when I pick him up. During that time I go to the gym (often, this is aspirational), shower, grocery/food/farm shop, get dinner mostly prepared, set appointments, research treatments and diet, blog, volunteer time for the special-education PTA and church, and—work. Many days, not much time gets left for work. Many weeks, I try to cram all the lawyering into the one or two days I’m able to go to the office. Furthermore, when work, by necessity (lawyers don’t always have control over their schedules), spills into “Martin” time—say, when I have to take a conference call from a playground, or an emergency project precludes me from completing reading exercises—the guilt becomes oppressive. Why, I ask myself, do I even bother working? Why, when I am within the very lucky minority of biomed parents whose spouses earn enough to cover expenses, do I sacrifice any of Martin’s due for my own selfish craving for a life apart from autism recovery?

Around Christmastime, I sat down with the chairman of our little law firm and told him I need to reduce my work even more and, to the extent possible, restrict my activities to writing projects that can be anticipated in advance, in order to keep my schedule regular. The conversation followed upon a difficult November and December, during which I oversaw document discovery, dealt with witnesses and clients, prepared our office for a contentious mediation, and traveled. I began the conversation, “I think you know I’m done for.” I’ve been mostly successful, since then, at reducing the workload and increasing predictability, but it remains a struggle. The chairman wants more from me; I enjoy the intellectual challenge and the opportunity to think about something other than, say, Lyme disease and vision therapy. Still, I have been given the tremendous opportunity to let Martin’s recovery take precedence. That gift must be honored.

So there you have my ugly truth. Despite a supportive husband, a housekeeper, competent assistance with childcare, and an employer that understands my need for flexibility, I have trouble working even part-time.

Dear reader, you think I am the perfect mom? I look at my church friend G—, who fully recovered the oldest of her five children while also working part-time, by necessity, to supplement the salary of her husband, a public servant. I look at G— and think, That’s the mother my son deserves, for I fall short in so many ways.

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Martin following his cousin up the mountain (no path required), Triberg im Schwarzwald, Germany.

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.

Searching the Storm for Silver Linings

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.

One Strike, Almost a Second Strike, and a Continuation

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

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.