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 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

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.

I’m the Issue

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.

Del Sur IV: That Doesn’t Sound So Bad

Adrian’s two sisters, each a mother herself, don’t know about Martin’s autism, because Adrian refuses to tell them. Adrian’s official position is that, given the discrimination that still exists against disabilities and difference in his country of origin (where my in-laws reside), he would rather not see Martin “branded.” (Adrian’s parents and brother, Pancho, know the diagnosis. Adrian is closer to them.) I don’t begrudge Adrian’s choice. Even here in the States, we haven’t been public about Martin’s autism, or former autism.

On the other hand, the ignorance of my sisters-in-law leaves me in an awkward spot when Martin and I visit South America. For years I’ve avoided spending too much time for them, or covered when it came to Martin’s behavior, like I covered on our first day this visit. How many times can I say Martin is tired, jet-lagged, on a different schedule, shy, not feeling his best? Try me.

I decided this year I might be able to do something different. I approached Adrian with the idea of telling one sister—Claudia, who lives in the capital city we were visiting, and whom Adrian likes better—about Martin’s new diagnosis, ADHD. “Autism” strikes fear. “ADHD,” on the other hand, makes people wonder if your kid is taking the same drugs as their kids. Adrian agreed. ADHD doesn’t sound scary like autism sounds scary. We decided that I would share with Claudia “our challenges with ADHD.”

I didn’t really find a good opportunity to talk until our last evening in town, when Martin stayed with my mother-in-law while I went out to dinner with Pancho and Claudia. Then I fumbled, trying to come up with a way to initiate the conversation. An hour into dinner, Claudia said we should come down in July to go skiing during her children’s winter break.

“I wish we could! But Martin goes to school during the summer. Next year maybe we could come—he might change to a new school and have summers off.”

Awkward. Still, my comment moved the conversation in the desired direction. Claudia asked, “Martin is changing to a new school?”

“Yes,” I replied. “Right now he goes to a special school for kids with ADHD. But his attention has been getting better. We are thinking he can go to a regular school, with some extra help.”

If this fazed Claudia, she gave no hint. She said, “And then he would have the summer off? Do you think you could come here for the whole summer? We could do so much skiing!”

“I don’t know about the whole summer. We could probably come for a while,” I said. “It all depends on whether he gets to switch schools. We still have work to do on the attention span and all the issues that have to do with ADHD. We’re not sure he’s totally ready to leave his special school.”

Across from me, Pancho was nodding. He has known about Martin’s issues for years and could see what I was trying to do.

Claudia said, “This will be great. I’ll send you the schedule for my kids’ school vacation, so you’ll know when to come.”

Last try. I said, “I will have to let you know what happens. ADHD is very hard to accommodate properly in school. You can see Martin’s poor attention span.”

Claudia said, “I’ve heard it’s very common in America to change schools. Not here. My children will go to the same school until university, just like we did.”

There went my big talk with Claudia. At least, somewhere in her head is the notion that Martin has special challenges. I suppose that’s enough for now.

Final note: In the first paragraph of this post, I mentioned “the discrimination that still exists against disabilities and difference in [Adrian’s] county of origin.” I don’t know whether the culture of Adrian’s country of origin engenders unusual bias against disability. On my visits there, some 10 times and counting, I haven’t witnessed autism discrimination. But when it comes to Adrian’s own country of origin, I will let his opinion carry the day.

 

Del Sur II: ¿Asperger’s?

I read James Joyce for the first time when I was 17. It was A Portrait of the Artist as a Young Man, and it knocked my socks clean off. With the benefit of maturity, I’m pretty sure that most teenagers who read A Portrait of the Artist end up sockless, but 27 years ago, in high school, I felt singled out and special: James Joyce got me. He wrote the novel for himself and also for me. Stephen Dedalus was an alter ego for Joyce and me both. His stream of consciousness was also the wandering path of my own mind.

Martin speaks constantly nowadays. Constantly. It’s as if, those years when he lacked language to express himself, he built a bank of unsaid thoughts, and now the words gush, unfiltered. He alights the school bus yammering. Dinner is a series of, “Hang on, Martin. How about if the grown-ups get to talk for a minute?” He falls asleep holding court with his stuffed animals. Wednesday morning he materialized in our bedroom at 4:00 am and said something like, “I just woke up. My body woke me up. Maybe I’m not sleepy anymore? It’s still dark outside. Your clock says 3:54. Can I watch television? It’s Wednesday. I have school today. Why do you think I’m awake? Are you getting up now? My covers were tangled.” (I managed to convince him that his body woke him up because he needed to go to the bathroom. He went to the bathroom, I untangled his covers and tucked him back in, and blessed silence fell again.) I have become one with Stephen Dedalus. I’m living a stream-of-consciousness existence, and the consciousness is seven years old.

In South America, with few planned activities and much free time, I experienced just how very much Martin talks these days, and usually to me. He was a running soundtrack of our trip. “This morning I woke up at 7:37. Mommy, were you awake? Did you hear me get up? I looked at the clock, and it said 7:37. I wanted to get up at 7:00. I got up 37 minutes late. It was already light out. Tío was getting ready for work. I looked out the window and saw a balloon in the sky. Mommy, where were you? I found you in the kitchen. What time did you get up? What time did you eat breakfast? I played with my iPad while I was waiting for breakfast. Today my cousins are coming over. They are still in school. What should we do before they come over?” His cousins rang mute by comparison.

I am not complaining, not by any means. If you’ve had a child without functional language, if you once thought “I want you to do that again” was the linguistic apex of beauty and complexity, you understand: I, we, have fought for every sentence that Martin emits, and his chatter is our prize.

That’s what I remind myself when I’m hearing, for the 478th time, that there are three mommies and Martin needs to decide which is the real mommy. (Some episode of Mickey Mouse Clubhouse evidently had two Goofy characters, only one of which was real, or something like that, and Martin’s been running with the game for weeks.) He’s perseverating. The game is annoying. But the sentences are perfect, the syntax is solid, and every day he picks up new idioms.

So here is a question: Doesn’t this sound a lot like Martin has Asperger’s? Classic hallmarks of Asperger’s are a preference for the company of adults over children; long-winded discourse, regardless of whether anyone is listening; repeated return to one topic; speaking in a fast or “jerky” voice. Martin’s official diagnosis, now, is ADHD. The (mainstream) neurodevelopmental psychologist opined that Martin no longer meets the diagnostic criteria for autism. Asperger’s is a form of autism. What gives?

Good thing I’m not that into behaviorally based diagnoses. I followed Stephen Dedalus. I can follow this kid, wherever he’s taking us.

Contributions

If you read yesterday’s tedious post about a Tuesday morning, you may have asked yourself why I, your blogger, was the parent doing everything. Adrian, who is not only my husband but also Martin’s father, was at home that morning. His role in the story was limited to showing up for toast and coffee, showering, and leaving later than usual in order to drive me to the train station. And goshdarn it, he got to sleep until 6:30.

Autism recovery is long and expensive. You know that. For me, the heartbreaking posts in my on-line biomed groups are the ones like, “I’m trying so hard to help my child, but my husband subverts everything I do,” or, “Before autism, we had a real marriage, but now I’m married to him only because I need the insurance,” or, “I’ve become a single parent, with limited resources. If you had to pick either organic food or supplements, which one would you buy?”

If parents intend to navigate the autism-recovery journey together—or even remain a loving, adult couple in the face of autism—they need to find their way to the same page, i.e., to talk openly and craft a mutually acceptable plan. In our family, by agreement, the division of labor is this:

Me:

Research treatments; schedule all doctors and therapists; plan necessary travel; monitor diet; procure and prepare special food; order and administer supplements etc.; coordinate childcare for when I’m working or otherwise unavailable; oversee detox baths and sauna use; inquire about and visit schools; keep medical and school records; serve as activity chauffeur; monitor home environment; be assumed-on-duty parent at all times except when advance arrangements are made (“Saturday afternoon from 1:00-3:00, I need to edit a brief. Can you take Martin?”).

Adrian:

Earn the money to pay for all this.

Whether this arrangement is fair depends on your viewpoint. I am the parent who had to give up my career in order to handle Martin’s recovery effectively. That being said, I am also the parent lucky and privileged enough to be able to surrender an office job and devote my hours to Martin. I am the parent who gets less sleep in order to juggle all that needs to be done, and who manages the stress of autism/ADHD. That being said, I am also the parent without office and workplace stress, with more freedom in how I organize my time. I am both the parent who has to do most of the day-to-day decision-making and the parent who gets to do most of the day-to-day decision-making. Adrian cannot cook or prepare supplements or measure detox baths; when I must travel alone, Martin’s nanny Samara stays in our home to take care of him. To take care of Martin and Adrian both, really. That being said, Adrian never begrudges my time away from home.

Moreover, whether our arrangement is fair does not matter one iota, because it is the arrangement that works for me and Adrian. The very big decisions, such as whether to undertake chelation, or where Martin should attend school, we make together. I may go so far as to prepare a presentation of alternatives, with supporting information, so that Adrian can help make an informed choice. My being the biomed parent does not negate Adrian’s being an enthusiastic and involved father. Martin is Adrian’s Mini-Me. They dress alike, go to the gym together, rock-climb together, ride bikes together. They get the more typical parent-child relationship. I get the rest of it.

Adrian likes to say that it’s to my credit, not his, that Martin is doing so well. He calls Martin my “masterpiece.”

I respond that I couldn’t manage this process without my partner.

Past Tense

Years ago, when we were only a few months into Martin’s recovery, I was leafing through a magazine I found in our doctor’s waiting room. I don’t remember the publication’s title, or even its purpose; I think it may have been a resource for parents pursuing biomed.

What I do remember were a couple of personal-experience pieces written by typically developing teenagers in support of their ASD siblings. In one, a girl whose brother was already recovered talked about her brother’s autism and how it had led her to advocating on behalf of students with disabilities. Although my memory of the other details is nebulous, I can still recall this phrase: “During the time my family was affected by autism . . . .”

Those words struck me. They were so comforting, how they suggested that there can be an other side to autism, a time when autism is not a daily struggle, when recovery is not the long road (to where?) ahead, but when the reality has become a memory.

I’ve written now and again about autism symptoms that are so far gone that they no longer exist in my daily consciousness.

Martin, for official/school purposes, has lost his autism diagnosis.

We still have work to do. Lots of work. Martin’s executing functioning—meh. As a corollary, Martin’s attention span and ability to plan—ugh. Martin still has a diagnosis. “ADHD,” our new territory.

Yet—.

Last week I attended a conference in California, for the consumer advocacy work I do. I was meeting with the director of a non-profit organization devoted to monitoring toxins in personal-care and household products. She asked how I became involved in representing consumers.

I said, “Through my son. He had autism.”