Tag Archives: church

Del Sur, Interrumpido: Día de las Madres

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Sorry, so sorry! I have to interrupt my Del Sur vacation posts for a brief musing on Mother’s Day.

The children’s choir sang at our church Sunday, for Mother’s Day, and Martin sang with them. In addition, Martin was selected as one of three children to read a Bible verse, in front of the whole congregation. He was assigned 1 John 4:19: “We love because He first loved us.”

We began attending this church three years ago, after our family moved out of the City. Almost immediately, Martin began participating in the children’s activities, assisted by the unbelievable coincidence (or divine intervention?) of a Sunday school teacher who had recovered her own son from autism. For the first year, I was too nervous to let Martin participate alone, so I trailed him everywhere. I trailed him to the front of the church when the kids gathered around the pastor for children’s time, because he liked to wander to the organ and hit keys, or make himself at home in the choir’s box.

“Maria!” the pastor called one Sunday as I crept toward the chancel during children’s time, ready to check Martin, who was monopolizing the discussion. “Maria, please sit down. Martin is fine.” Of course, the congregation laughed. I was so embarrassed. After services, I asked whether I shouldn’t come quiet Martin when he talked too much. The pastor responded, “When you came here a year ago, Martin was too scared to open his mouth around me. If now he’s talking a little too much, I can handle that.”

I trailed him to Sunday school in the basement, because I didn’t want the volunteer leaders to feel burdened.

“No, you can’t come,” the Sunday school teacher told me one day. “Go back to your seat. I will send one of the older kids to get you if Martin has any trouble.” When I tried to sneak down and peek through the door, she caught me and shooed me back upstairs.

I trailed him to Tuesday afternoon kids’ club, or sent an assistant along, to make sure he could participate fully and the other children were kind. The kids’ club can be overwhelming; in fact, only this month have I allowed Martin to attend alone—which means Martin is now fully, independently participating in church.

Which brings us to this Sunday.

Adrian and I sat together, five or six rows from the front. Adrian doesn’t usually attend church, but Saturday evening at dinner, Martin had grabbed Adrian’s hand and asked so sweetly, “Daddy, will you not go to the gym tomorrow morning and come to the church to watch me instead?” During the opening hymns and readings, Martin sat with us, clutching the note card with 1 John 4:19.

When the children proceeded to the chancel to sing, Martin led the pack. Their first song, “Praise Him in the Morning,” involved hand gestures for morning, sun, serve, and so forth, and Martin more or less kept up. Then they sang the first verse of “The B-I-B-L-E,” stopping to allow the three children with Bible verses to read. Martin was third. He jumped and flapped his hands for just an instant while he waited, kind of a microburst of nervous excitement. When his turn came, with minimal prompting from a 10-year-old girl, Martin stepped to the microphone and said, “‘We love because He first loved us.’ First John, chapter four, verse 19.” He accentuated the –teen of 19 too much; other than that, the performance was stellar. Finally the children sang another verse of “The B-I-B-L-E” (all the verses are pretty much the same) and a concluding number before receiving their applause and scampering down the aisle to Sunday school.

Adrian recorded the whole performance on his iPhone. I watched from my seat, no concern that I would need to get to the chancel and assist or intervene. Even a year ago, I would have been on the edge of my seat with trepidation, ready to spring to action in case of disruption. This weekend, Adrian and I could have been any two parents proud of their kid.

During coffee hour, an older man I’ve smiled at but don’t recall ever speaking with approached me and said, “Your son did so well today. Even in the time I’ve known him, he’s grown so much.”

It’s going to take a lot to beat this Mother’s Day.

Clapping. Whispering. Not Simultaneously

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I planned to write an informative blog post about the role of mitochondrial support, and how going back on MitoSpectra has helped Martin since last week. But now I’m excited by events at church and want to write about them instead. That other, more informative post will just have to wait. Sorry not sorry.

At children’s time this Sunday—after the Gospel, before the choir anthem—the kids were invited to come sit in the front pew, which was empty, because, well, it’s church. Martin dawdled, of course, and by the time he arrived, the other kids had packed the pew. Martin exclaimed, “I don’t fit!” The congregation laughed. We got him seated. The substitute pastor gave a talk that was too long for little kids, and kind of boring. Still, other than making some funny noises with his mouth, which is a stim he has when his adrenals are stressed (I think), Martin did okay, looking around and enjoying the front pew. Then, after the too-long talk, the substitute pastor asked the kids to stay put for the choir anthem. I got worried; music excites Martin, and I thought he might call out.

He didn’t. He listened as the choir sang “Soon and Very Soon,” a song he knows. It was the Andraé Crouch version, in a setting by Jack Schrader, and in the last stanza the choir began a slow clap. For me (I was tragically born without a sense of rhythm), it wasn’t an intuitive clap: not every beat, hard to hit just right.

Martin began to clap. Not to clap randomly—he started to clap along with the choir, exactly right, exactly keeping time with their slow, challenging clap. I was blown away. It’s long been a challenge to get Martin to keep time with anyone, whether walking, or talking, or running, or playing. Evidently, not anymore. Only one or two other kids clapped, so Martin had to watch the choir and take their cues. He succeeded.

That was enough to make my day. Later in the service, however, Martin delivered even more. His next feat came after communion. He’d already gone downstairs to Sunday school and come back up, carrying a picture. He’d drawn a marching band (that’s a favorite motif) passing in front of the church, and he wanted to point out the details. “This is a trombone, and look, here is the pastor watching them.” The time that Martin picked for his exposition was also announcement time, when the substitute pastor was recognizing birthdays and reminding everyone about the men’s breakfast group and charity gift drive, so I put my index finger to my lips and shhh!ed Martin.

Martin kept talking (predictable) but switched to a whisper. Martin has never whispered unprompted before, and he’s never been able to sustain a whisper more than a few words. Now he switched to a whisper and kept it going, sentence after sentence. The drummer was carrying his drum set, he showed me, and there was a tuba player, and here were all the people standing on the sidewalk applauding. Whisper, whisper, whisper. I didn’t try to shush him again. I ignored the church announcements and whispered back. We whispered an entire conversation.

Before the final song, Martin asked to take his snack and go to the common room, where we have coffee hour. I let him. After a minute he jogged back into the sanctuary. The choir was exiting, down the center aisle. Martin stood just inside the doorway, across the sanctuary from where I was, and caught my eye. I motioned for him to come to me. In days past, Martin would have ignored that and called to me from across the sanctuary, regardless of what was going on. This week, instead of calling out, he came. He jogged, ducking around the choir robes, to my seat and asked quietly, “Um, may I please start eating my snack?” I figured that an adult must have seen him in the common room and, knowing he follows a restricted diet, told him to go ask his mom whether it was okay to eat the snack. (Understanding and conscientious parents? Very patient parishioners? We are so blessed.) “Yes,” I said. “Go ahead.” And he disappeared again.

Later, when I had made my own way to coffee hour, I was approached by a woman I don’t know. She introduced herself and said she’s been coordinating the Christmas pageant this year. (Martin has been cast as “Shepherd No. 2.” He has two lines, which he has memorized.) “I just wanted to tell you,” the woman said, “your son is a joy. He is an absolute joy to work with.”

Boo-yah. Can you see why I decided to leave mitochondrial support for tomorrow?

Last

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Martin attends our church’s Tuesday after-school program for kindergarten-through-fifth graders. Because the program is volunteer-run, and because I want Martin to participate as fully as possible, I send an aide with him. The aide, Janine, is a special-education professional whose assignment is to ensure that Martin is included, to help Martin with any projects or activities that might otherwise overwhelm him, and to back off whenever Martin is able to handle the situation unassisted. I would accompany Martin myself, except that my presence is nothing but a distraction. When Mommy is in the room, I’m afraid, Martin has eyes for nothing else. Besides, who wants to play with the kid whose mother is hovering behind?

I can’t say that Martin loves going to the Tuesday program. He tries to get out of it whenever possible. (“I’m so tired!” “I don’t feel well!” “Oh, I just want to do my homework.”) Compare that with Sunday mornings, when Martin eagerly accompanies me to church and participates in children’s Sunday school. I don’t know what accounts for the contrasting attitudes. It could be that Tuesday afternoons he is exhausted from school and wants time alone, or that the Sunday school teacher (Sundays he has no aide) lets him get away with only minimal participation. It could be that he doesn’t like having an aide, although he’s never asked to attend Tuesday alone, only to skip the event altogether.

I wrote that verbose introduction to establish that although I am not present at the Tuesday after-school program, I know a lot (through Janine) about what happens there. (Perhaps I got distracted from that point.) Often Janine’s report is super: Martin was asked to light the candles and did so without help; Martin sang along in choir practice; Martin played tag properly in gym; Martin raised his hand and answered questions after storytime. Some weeks Janine’s report is tougher to swallow, such as the two occasions on which no one wanted to hold Martin’s hand during the prayer circle. (He was in the grip of allergies and probably using his hand as a tissue.)

This Tuesday, Janine said that the gym teacher, who usually has the kids count off or otherwise randomly divides them for sports and games, decided to appoint two team captains and let them pick teams. Remember those days from grade-school gym class? Two kids stand up front, pointing to the best athletes first. The chosen teammates join their captains, relieved. I remember well. I was usually the first girl chosen, and I liked that. I also understood why the teachers stopped the process when half or two-thirds of the kids had been picked, and just split the left-overs between the teams. This Tuesday, at the church, the gym teacher didn’t do that. He let the picking go on and on, right down to the very last kid, on and on until only one kid was un-picked, until there was only one kid standing alone, unwanted by either team.

I’m sure you know who that kid was. Take any group of typically developing grade schoolers, mix in one kid with autism, and see who gets picked last.

Martin did not show any overt reaction, Janine reports, but it is always hard to tell what he’s internalizing.

I hate when things like this happen. I hate the insensitivity of an adult who would let that happen. (Next Tuesday I will show up at the church a few minutes before the program begins and explain to the gym teacher, in kind and polite words, the effect of his decision on my son.) I hate wondering how much Martin’s self-esteem suffers from his difference, and the irony that our efforts have improved his awareness enough to know that he’s being left out, but not enough to know how to fit in. I hate wondering whether Martin will ever be fully included.

I also hate dealing with these questions at this time, because Adrian and I are facing a difficult decision. Since kindergarten (he’s in second grade now), Martin has attended a wonderful self-contained special-education school. His class has twelve students, each with autism or some other type of disorder that affects the ability to communicate. The pupils are bright, and they soldier on under the “common core” standards now stamped onto our public schools as widely as vaccination requirements. Adrian and I have realized, however, that Martin is perhaps not being challenged academically; his homework packet takes him no more than ten minutes to complete, and about eight of those minutes are dedicated to arguing with me over whether he can illustrate the homework because he’s bored. Adrian and I have wanted to believe that, even if Martin isn’t challenged academically, at least he has social role models; half the kids in his class have language challenges but no particular social impairments. On the other hand, over the past year, Martin has made enough progress, socially, that he is nearing the level of those social-top-tier classmates. So now what? What is the next level that Martin can reach, if he remains in his self-contained special-education school?

For that reason, we are considering attempting to find a private school, with small general-education classes, that would be willing to let Martin come to school with an aide, at least for the first year or two. Martin might not be ready, yet, to make the jump to general education. Moreover, it would be a one-way street; if we pull Martin from his current school, we will likely lose his placement there, and have no option to re-enroll him. On the other hand, we know that elementary curriculum (public school, or private) becomes advances rapidly in third grade, requiring more drawing conclusions and making inferences. If there is a “best” time to more Martin out of special education, we may be approaching it.

Then I remember what I hate. Even if Martin isn’t challenged in his current environment, at least he’s safe. At least he’s neither bullied nor left standing, alone, when the teams are picked. At least his self-esteem—maybe his most fragile attribute—is padded and protected.

To leap, or to stay safe? Even on that everyday question, autism leaves its mark.

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Closer?

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Time for another dispatch about church. I write a lot of dispatches about church, because (1) we’re there once a week (or so), giving me a convenient, less-than-daily forum to mark progress; (2) I see Martin with other children, and with adults; and (3) Martin always seems to be engaging in adorable antics at church.

The scene: Pastor has called the children to the chancel for their sermonette before they head to Sunday school. The dialogue: I wasn’t recording, so I’m going to do my faithful best to recreate:

Pastor:            “Good morning, children.”

Children:        “Good morning, Pastor!”

I distinctly hear Martin’s voice amidst the half dozen children. He calls out clearly, “Good morning, Pastor!”

Pastor:            “Today’s lesson was about a mustard seed, a tiny mustard seed. Do you know how some people always think bigger is better?”

Martin:           “No, bigger isn’t better!”

The same clear voice, calling out. The entire church can hear him, I’m sure.

Pastor:            “You don’t think so, Martin?”

Martin:           “No, I don’t like bigger.”

Pastor:            “I suppose when I was your age, I also liked smaller better.”

Martin:           “I’m six years old, but I’m almost seven.”

Now he’s monopolizing children’s time, still clear as a bell.

Pastor:            “When is your birthday?”

Martin:           “It’s this month! It’s the last Tuesday of this month.”

Pastor:            “So you’ll be getting bigger, like this mustard seed.”

Martin:           “Um, look at my new shoes!”

Whoops. Nonsequitur. I suppose Martin wanted to keep the floor but didn’t know how to follow the mustard-seed thought. By now members of the congregation are tittering good-naturedly.

Pastor:            “Where did you get those?”

Martin:           “At the store.”

Pastor:            “It must have been Stride-Rite. Your shoes say ‘Stride-Rite’ on them.”

Martin:           “Yes, of course it was Stride-Rite!”

The congregation laughs. The pastor manages to squeeze in another sentence or two about the mustard seed, then dismisses the children to Sunday school. As their little procession passes down the aisle, Martin looks at me, waves, and calls out, “’Bye, Mommy! I’m going downstairs now,” to the ooohs and aahs of those around me.

After the service, as the pews are emptying and then during coffee hour, I am approached by four different parishioners, each calling Martin “adorable” or “cute.” Even better, one woman who knows Martin has autism comments on how much he’s coming out of his shell. Best of all, an older woman with whom I’ve never shared the diagnosis says, “Your son is so articulate!”

Wait. She doesn’t just say that Martin is articulate. She swoons.

Martin, articulate? My son? Glad I happen to be standing in church, because I’m doing a lot of praising God.

Last month at the AutismOne conference, I met this amazing Supermom from Minnesota, who is working to recover her not-yet-verbal 12-year-old son. At lunch one day with other moms, we started sharing pictures and videos of our kiddos. I called up out a particularly strong performance—a video Adrian and Martin taped from bed that morning, telling me what they planned to do with the day—and handed the Minnesota mom my iPhone.

She watched the video, handed back the phone, and said, “I don’t want to diminish the struggles I know you have, but if I watched that video without knowing more, I would think your son was typically developing.”

Right there, at Maria’s Mexican Restaurant behind the Loews Chicago O’Hare Hotel, I started to cry.

Bringing Out His Best: Another Post of Subheading Length

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Playing Down

We used to have Martin in “adaptive” (special-needs) soccer and karate.

The soccer group comprised six kids, ages six (Martin) through 12, and even more coaches and volunteers. Basically, each kid had a dedicated volunteer, and on top of that were a coach and an assistant coach. The coaches were energetic special-needs professionals who’ve obviously been doing this work a long time. The volunteer assigned to Martin was a patient high-school kid willing to work hard to get Martin moving. The lessons took place in a well-equipped indoor sports facility, on a Saturday morning, which is an ideal time because Martin is not exhausted from school.

The whole soccer thing was a disaster.

Martin was not the highest-functioning—that’s a stupid, despicable term, and I’m sorry I can’t find a better choice—soccer player. The group had a super-competitive Aspergery kid who sprinted every sprint fastest, shot every shot farthest, and even knew how to dribble. After each maneuver he ran to the sideline and asked, “Dad, did you see me? I was first!” There also were two kids whose attention spans were even shorter than Martin’s, and who needed hands-on physical assistance for every exercise: a wrist held while running, a foot guided to meet the ball.

I wish that Martin, in a situation like that, would rise to the occasion. I wish he would chase the Aspergery kid and try to kick just as accurately. I wish he would perform to the best of what surrounds him.

Alas.

Martin, instead, assumed every behavior we’re worked to alleviate. He ignored directions and ran where he wanted. He flopped to the ground and refused to move. The ball, he picked up and carried to the goal. The field cones, he kicked. When asked to participate properly, he whined, “No, no, no.”

It was painful to watch, and when the same scene replayed weekly, I grew to detest taking Martin to adaptive soccer.

Karate was worse still. That group was larger, probably a dozen kids, and met in a regular martial-arts center, with mirrors on the walls and a waiting area right next to the performance mats. Karate entails more instructions than soccer, which means more sitting and listening. Can Martin sit and listen? No, he can’t. And those stupid mirrors! He spent his time admiring his handsome mug while making faces. Many of the karate kids were fully engaged, executing the obstacle courses and jabs and punches. Martin used every distraction to divert himself from karate, and when he didn’t have a specific distraction, he rediscovered me in the waiting area and scampered to the edge of the mats to say, “Mommy, am I doing a good job? What am I doing? Am I doing karate?”

I started asking Adrian to take Martin to karate. Or my brother or parents to take him, whenever they were visiting.

Those were our experiences with adaptive sports.

Adjusting Upwards

For the past two years, Martin has attended our church’s “Kids’ Klub” on Tuesday afternoons. (I use quotes around “Kids’ Klub” because of Club being intentionally misspelled. Ugh. Ugly.) The “Kids’ Klub” is for all kids; in practice, Martin is the only participant with autism, and we send a special-education professional along to assist him as a sort of one-on-one aide.

During the same time that Martin was running amok on the soccer pitch and ignoring his karate lessons, we were getting updates from his Tuesday-afternoon facilitator that sounded like this: “He’s participating more every week,” or, “He really doesn’t even like me helping him anymore. I just step back and let him do his thing,” or, “During the art project, he asked one of the older boys to help him with the scissors. He said I could go do something else.”

Two different portraits of Martin were emerging: The Martin in adaptive sports, whose performance matched the lowest expectations, and the Martin in a regular church class, who was doing his best to match the typical kids. Was it a fluke?

Adrian and I decided to find out. On Saturdays, Martin attends a three-hour fun program for kids with special needs at the Jewish Community Center near our home. The JCC also has a variety of after-school activities that are open to all children, but geared toward the typically developing. Last month, I met with the director of special-needs programs (who knows Martin well), and then with the director of after-school activities (who didn’t know Martin at all), to discuss whether Martin might try attending, alone, a program geared toward typically developing kids. The director of special-needs programs said she thinks Martin is in a kind of “middle space,” still with challenges but not necessarily needing the attention of an adaptive program. The director of after-school activities said she was willing to let Martin give it a shot, though she wanted us to consider sending a one-on-one para along if the instructor decided Martin needed that help.

Finally, we all agreed on a good choice: an after-school gymnastics class for five- and six-year-olds. The group is small and well-organized, it entails almost constant movement, and Martin would be one of the older participants.

Whence My Anxiety?

I have had many painful moments in the journey we have taken since I first understood that my only child has autism. The moment I usually count as most painful came more than four years ago, late 2010, after Martin was diagnosed but before we started biomed. Martin had been attending a “Twos Club,” two afternoons a week, at the Manhattan-based, for-profit “City Kids Club” (not the real name). We enrolled Martin in the Twos Club, originally, before his autism diagnosis. Even then, we had noticed that he had trouble following directions, and didn’t seem to pay attention like other kids his age, and we were worried that he would perform poorly on his preschool admission interviews. My word, we’ve come a million miles since our days of high-pressure, well-off New York City parenting. When we signed Martin up with City Kids Club, they said they could help. They wouldn’t coddle him. They’d teach him to listen and to follow directions. In no time, he’d be in shape to get into a top-notch preschool.

It didn’t work out that way, of course. When the Twos Club let out, Tuesday and Thursday afternoons, half a dozen toddlers would sprint from the classroom and into their parents’ arms, showing off the art projects they’d made. Martin would wander out last, appearing not to notice me, shuffling under the direction of a staff member who carried his incomplete art project. The differences were becoming more apparent. And then we realized, y’know, autism.

Martin was still participating in the Twos Club when we were in the process of procuring Early Intervention services. I met with a director of our City Kids Club location. Would the services include a SEIT or a behaviorist? she asked. Maybe we could ask that person to accompany Martin to the Twos Club and help him participate? Okay, I said. I’ll see if that’s possible.

We aren’t getting a person who can accompany Martin here, I told her at a subsequent meeting. We’re going to receive center-based ABA services instead, so we’ll keep this the way we’ve been—

“Actually, we really need someone like that to come,” the City Kids Club director said. “Keeping Martin in the Twos Club without an assistant is becoming impossible. We have to assign an extra instructor to the Twos Club just to deal with Martin, and we don’t have the staff to do that for every class.”

The director and I stared at each other.

Come again? Were we being kicked out of the City Kids Club Twos Club? Holy cow. My son was about to be kicked out of an open-admission toddler program.

We had paid for the entire semester. The lawyer in me wanted to shout, “You’re kidding me, right? You’re kidding me? Because you are not going to remove my son from your program. You will allow him to participate.”

The shell-shocked autism newbie in me panicked and decided not to give the director that chance. I lied, “Martin’s Early Intervention class is going to overlap with this time, so he won’t be able to do both. Next Thursday will be his last day in the Twos Club.” The director did not offer me a refund for the remaining weeks, and I never requested one.

The following Tuesday, Martin’s second-to-last session, Samara, who had picked him up, brought me a disturbing report. At the session’s end, the Twos Club proceeded into the gymnasium area, adjoining the lobby where Samara waited, and the instructors blew bubbles for the kids to chase. The “extra instructor” assigned to Martin had clamped her hand tightly around Martin’s wrist and not allowed him to chase bubbles. She held him just to the side, where he could see the other kids having fun but could not participate. According to Samara, Martin had struggled against her and tried to reach the other kids and the bubbles. The extra instructor had responded by looking annoyed. She released him only when the bubbles were done.

My two-year-old son, deliberately withheld from participation. Made to watch. Punished. For what? For autism? My word, who would do such a thing? To what kind of program had I submitted my child?

I let Martin attend his last session that Thursday, because I had told him he was going and did not want him to perceive further rejection. I took the afternoon off work and picked him up early, before the other parents. The head instructor emerged with Martin. She handed over the day’s art project, and a City Kids Club t-shirt, and a “certificate of completion” for the program he had not completed, and all the while she smiled and told me how they would miss Martin. In my head, I pictured Martin held to the side, made to watch bubble fun and not allowed to join. As the instructor talked, I busied myself buckling Martin into his stroller. Then, because I knew I would not be able to speak without crying, I nodded dumbly and turned away.

Somehow—and I made a point of this—as I pushed Martin out of the City Kids Club for the last time, I managed to walk tall and dignified, despite the tears dripping from my cheeks. Forget you, City Kids Club. I’m proud to be the mother of the kid you don’t want. Once on the sidewalk, I knelt and told Martin that he was the best boy in the world and that I never imagined that I could love anyone as much as I love him. He stared past me, to the city traffic, and didn’t respond.

I’m crying as I write this. Seriously. I’m sitting in a Chipotle with my laptop and crying.

“It’s called ‘The City Kids Club’,” I lamented the next week to an old friend, “not ‘The City Club for Typical Kids’.” My first life-lesson in inclusion, in exclusion, had come and gone.

A New Martin, a New Me

Much has happened in the years since the City Kids Club did not want Martin. I have had better experiences with general (non-adaptive) programs, such as the aforementioned church Kids’ Klub, and the variety of one-afternoon events sponsored by our local park and preserve. (I’ve noticed that not-for-profit and volunteer-run activities tend to be more receptive to kids with differences than for-profit establishments are. I’m generalizing wildly. And eagerly so.) I’ve had time to meditate on Martin’s (current) limitations, and to ponder the economics of inclusion. That’s a fancy way of saying I’m marginally more forgiving of the City Kids Club. Yet however much wisdom I’ve acquired these last several years, what happened there still stings, and I fear putting us into a place where such rejection in possible.

… Which brings us back to gymnastics. Martin has been attending non-adaptive gymnastics at the JCC, weekly, for a month. The first class, Martin’s behaviorist accompanied him. She reported that he followed directions well, and that she physically assisted him only on the balance beam. (Martin, Mr. Mitochondrial Disorder, who sometimes falls out of chairs, on a balance beam!) Beginning with the second class, Martin attended alone. That class, and every week since, Samara or I have made, to the head coach, some version of this speech: “We want Martin to do everything himself, and to be included as much as possible. That being said, we know you have a class to run. Please don’t hesitate to tell us if Martin needs extra help, and one of us will come help him.” And so far, the response consistently has been, “Martin is doing fine. He does not need one-on-one help.”

Major. Victory.

The third week, I lurked around the gymnasium, observing while trying to stay out of Martin’s sight. The class has about a dozen kids, three of them boys. One of the boys seems to be apraxic and in fact does come with a one-on-one aide. The other boy has some behavior problems, diagnosed or undiagnosed. While I was watching, he disrupted the class several times and had to be asked to return to his spot, wait in line, and so forth. Martin, for his part, needed more assistance than other kids on coordination tasks, such as somersaults. He didn’t complete the obstacle course with the same urgency. Twice he cut a line, once he invaded the personal space of the boy with behavior problems (hugged him), and he required a few “refreshers” on directions. But overall he did well. He did not disrupt the class. He participated. More importantly still, he wanted and tried to participate.

Sometimes, Kids Suck

Almost at the end of the hour that I observed, Martin was waiting in line to use the balance beam when he turned and spoke to a girl he doesn’t know. Wow! I thought. Martin is addressing a new child. Great! What he said, I don’t know. But when he turned away, the girl caught the eye of another little gymnast, pointed to Martin, and then twirled her finger around her ear, making the classic “he’s crazy” gesture.

Martin didn’t see her, thank goodness.

But I did.

Kids will be kids. A six-year-old girl’s cruelty is not equivalent to an adult’s indifference. I hatched a plan: If one day I happen to see that girl with her mother, I will introduce myself, explain in the kindest terms possible what happened when my son spoke to her daughter, and ask if they might like to do a play date sometime, so the kids can get to know each other. I hope I do see the girl with her mother. The situation could turn positive for everyone.

The End of the Post and, Like, the Middle of the Story

Nine times out of ten, I know how I will conclude a blog post almost as soon as I draft the first lines. This post is different. I’ve written it over many days. (The Stanley Cup Play-Offs are happening. I’ve had a lot of hockey to watch.) I’ve not yet come up with the ending, so indulge me a microcosm/analogy:

Gymnastics is going great. Not perfect. Not without bumps. I’m not even sure where this “typical” class will end up, but all signs point to Martin’s full, independent participation. Eventually.

Our autism-recovery journey is going great. Not perfect. Not without bumps. I’m not even sure where this life will end up, but all signs point to Martin’s full, independent participation. Eventually.

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Not on This Continent

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We had a substitute pastor this weekend at church. During children’s time, as the kids in fifth grade and younger surrounded her, she asked whether anyone had ever picked wild blackberries. Several kids raised their hands, Martin among them. I wasn’t sure whether Martin was following this pastor, with her monotone voice and faded manner, or whether he was just raising his hand because other kids were.

Turns out, the former. As the substitute pastor started to move on, Martin interrupted by calling out, “I picked wild blackberries in a country that is not on this continent!” In fact, that was true. In February, when we visited South America, Martin joined his older cousins picking blackberries along a highway. (Was I terrified of this? I was. When in Rome, let your children roam free and close to speeding trucks, I reckoned.) Then the cousins set up a stand and yelled, “¡Moras! Se venden moras,” at every passing vehicle until they ran out of blackberries and had a few pesos in their little pockets. Martin found this all very exciting.

Most kids would have said, “I picked blackberries in [whatever country],” or, “I picked blackberries on vacation” —if they had interrupted at all, which is another story. Martin, however, said “picking blackberries in a country that is not on this continent.” He’s fixated on geography. Apparently he assumed that “in a country not on this continent” was specific and informative enough to make his point.

I was impressed that Martin was following the substitute pastor, and that he correctly related his experience, and that he had the courage to talk in front of a stranger. On the other hand, what he said was quirky. Eyebrow-raising. We remain in flux. Martin can say things now. He doesn’t yet say them the way most people would. Again we return to this question: As Martin continues to recover, will he become ever more “normal”? Will he lose his specialness?

I regretted that our usual pastor was not present. In the two years since we started attending our new suburban church, the pastor has got to know Martin pretty well. He would have taken a moment to follow up and ask Martin what country he meant, and Martin would have felt proud of participating at children’s time. The substitute pastor ignored Martin’s comment, however, probably because Martin was speaking out of turn. It’s not the first time that has happened when the regular pastor isn’t around.

Martin is becoming more “normal,” of course. I’m glad that means that he will face fewer instances of being ignored, fewer occasions on which an adult takes him for simply an undisciplined child. And I feel certain of this: This kid of mine will become more normal, but he will never lose his specialness.

Praise Him in the Morning

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I have to tell you about church this weekend. I’ve got to tell you about church this weekend.

The children were scheduled to sing “Praise Him in the Morning” during the service. When the children sing, so does Martin. He attends the church’s Tuesday-afternoon Kids’ Klub each week, where the children practice with their music minister. This weekend was already the third or fourth time Martin has sang at church since December. Even in that short space of time, I’ve seen the level of assistance he needs decrease rapidly. Initially, he stood in the nave with the other children but really didn’t sing, and sort of wandered. Now—

Actually, let me start with something else. The children were asked to arrive 20 minutes before the service, for a final rehearsal. We were late and made it to the narthex only five minutes before the service. I told Martin to hurry and shooed him toward the rehearsal room downstairs. He turned back and started to ask me to come. Just at that moment, one of the women who helps with Sunday school was passing. She said, “Oh, are you going to rehearse? Come on. You can come with me.” Martin hesitated only a second before heading downstairs with her. Until recently, Martin never would have done that. He would have insisted that I come, or staged a meltdown if I didn’t.

I entered the sanctuary with my father, who was visiting for the weekend, and chose two seats on the aisle near the back.* Soon the children, about 20 in total, appeared and headed together down the aisle. Martin left the group and came to me with a happy “Mommy!”

“Hi, Sweetie,” I said. “Do you want to sit with me, or with the other children?”

I don’t think Martin had realized the children would be sitting together near the pulpit (they do that only on “performance” Sundays), because when he saw them filling the front pews, he scampered up the aisle to join them. By then most spaces were filled, and I feared Martin might get frustrated and return to me. He didn’t. He bopped around a little and finally made space for himself amongst the older boys.

The service began. I watched Martin, fearful that, out of my reach, he might do something disruptive. Not my Martin! I can’t say he paid any attention to the service—let’s reiterate: he’s six—but he did sit quietly. Only once did he start talking, whereupon the fifth-grader next to him promptly and effectively shushed him. And once he quasi-snuggled the boy to his other side. (We’re having some issues right now with respecting personal space.) That boy was patient, and the incident passed. Through the opening hymn, the prayer, the Kyrie, the first reading, the responsive psalm, the second reading, and the Gospel, Martin behaved.

Finally the children shuffled onto the chancel. First they sat and heard a three-minute lesson from the director of the mission committee. Then they stood to sing. Martin knocked it out of the park. Not only did he stand almost still; for at least 80% of “Praise Him in the Morning,” he sang along.

(Yes, I recorded the performance on my iPhone. Yes, even before the sermon ended, I had sent the file to relatives and friends.)

After their big performance, the children sang a short goodbye song and headed off to Sunday school. There was a substitute teacher, which in the past might have worried Martin. Not this week. He participated fine. When I reclaimed him for the Eucharist, he was wearing his art project around his neck, a medallion on which he’d written, “I am a child of God.”

After the Eucharist, the pastor asked everyone to sit down, because he had many announcements and business matters to review. By then Martin was antsy, so I let him take his snacks from my purse and walk to the gymnasium, where coffee hour is held. That exercise makes me nervous, because coffee hour invariably includes an open table offering goodies not allowed on Martin’s restricted diet. Furthermore, the pastor really did have a lot to talk about, so ten minutes or more passed before I left the sanctuary and found Martin in the gymnasium.

He was sitting at a small table for children, eating a bowl of fruit. We had this conversation:

“Mommy! I went to the food and got myself a bowl and filled it with fruit.”

“You did? All by yourself?”

“Yes, and then I got this spoon and this napkin, and now I’m eating. I did it all by myself.”

“Martin, that’s terrific. And where are the snacks that we brought from home?”

“Here, look! I made my almond bar into a ball and put it with the fruit!”

I was absolutely tickled by Martin’s independence, and by his wise choice: With the food was a cream-filled chocolate cake, which Martin had walked right by to serve himself fresh fruit. I decided to celebrate by offering him a little orange juice. “Sure!” he exclaimed, and then asked if he could pour it by himself, which he did, without spilling a drop.

Who is this boy? Who is this kid who sits with the other children instead of with me, who sings with the chorus, who makes good choices and takes initiative to serve himself? He’s Mr. Independence.

He capped the performance Sunday evening, when we went out to eat. At the particular restaurant, Martin can eat the burger (grass-fed beef, with no additives) or the fish cooked in olive oil. He refused to reveal his choice until the waitress came. After I ordered, Martin asked me, “Is it my turn?” Then he looked directly at the waitress and said, “Um, I would like to order a burger, please.” I was about to begin reciting the additional directions when Martin stopped me and said, by himself, “No bread, no bun, please.” The waitress asked, “Would you like cheese?” Martin replied, “No. I can’t have that.” My job was limited to whispering, to the waitress, “Could you substitute steamed broccoli for the French fries?” And we were done.

I don’t use this term much: It was one heck of an FUA day.

*Informative note: In the suburban church we attend (new since we moved), the younger kids don’t stay for the sermon. After the Gospel reading and a short children’s lesson with the pastor, they proceed to the basement for Sunday school and don’t return until the Eucharist. Until last December, I didn’t stay for the sermon, either. I accompanied Martin to Sunday school, to help him participate and make sure he didn’t monopolize attention. One Sunday in December, the Sunday-school teacher, whose own son is recovered from autism, told me, “You don’t need to be down here anymore. We’re fine.” I expressed skepticism, and she said, “Really. Go upstairs. Sit near the back. I’ll send one of the older kids up if we need you.” I made it about ten minutes before I snuck back down and peeked in the door. They were fine. Martin was playing. No chaos.

Since that Sunday, I walk downstairs with Martin if he wants me to—which happens less and less—and then I return to the sermon. Still, I choose a seat on an aisle, near the back, in case the teacher needs me. Once, an older child came upstairs to ask me whether Martin could eat the gummy snacks they were having. He couldn’t, so I whipped a GAPS-compatible brownie out of my purse. That’s the only time I’ve been needed.

All Dressed Up

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“Martin, why don’t you go get yourself dressed like a big boy? Want to pick out your own clothes and get dressed?” I asked at nine o’clock yesterday morning. We had all slept late, and Martin was running around the house in jungle-print pajamas.

I didn’t believe that he’d actually get himself dressed. Six months ago, I laid pajamas out on his bed and spent 20 minutes trying to get him to take off his clothes and put on the pajamas. I went away to let him concentrate, returned every two minutes to beg or threaten or cajole, even lost patience (not my finest parenting). Martin continually forgot his task. He rambled about nothing, jumped on the bed, played with Curious George. I absolutely could not get him to focus enough even to remove his clothes.

Not too much has changed since then, except that for the last two weeks Martin has responded to every suggestion, however benign, with a resolute “No!”

Nevertheless, this morning I mentioned getting dressed only once before Martin said, “Okay!” and scampered down the hall to his room.

I went to the kitchen, where Adrian was eating breakfast. “I told him to get dressed,” I said. “I’m not hopeful.”

Barely a minute had passed before I heard Martin running down the hall from the bedrooms, yelling, “Mommy! Mommmmm-meeee!”

I found him standing in the living room, buck naked except for the blue socks he’d worn to bed. He looked straight at me (score!) and asked, “Mommy, am I still five years old?”

“Yes, you’re still five years old. Now don’t forget to change your socks.”

Martin ran back to his bedroom.

I returned to the kitchen. From afar, I heard a familiar sound. Martin’s bedroom dresser has thick metal handles attached to the drawers with leather loops, and when the handles are dropped, they clunk against the wood. The dresser is the last piece of a heavy German bedroom set that my older brothers once shared. As a kid, from my bed at night, I would hear that clunk and know Rudy and Eddie were getting ready to sleep. Now the sound ties Martin to his uncles.

“He opened the dresser,” I reported to Adrian. “I think he’s getting out clothes.”

After another minute Martin came running down the hall again. I met him in the living room. He was wearing clothes.

“You got dressed!” I exclaimed. “You got dressed! Good work! Go show your daddy!”

Martin went to the kitchen through the family room. I went through the dining room and got there first, which gave me a second to throw my fists in the air, jump up and down, and whisper to Adrian, “First time. First time dressed by himself without a reminder.”

Martin arrived. As Adrian picked him up for a hug, I surveyed Martin’s choices. Navy blue sweatpants with CHICAGO printed on one leg. A white sweatshirt with blue stripes. Adrian set Martin down, then snapped the sweatpants waistband to make a confirmation. “You’ve got underwear,” he said.

“Oh dear,” I added. “Martin, you’re doing so well. But you did forget to change the socks. Go change your socks?”

Back down the hall went Martin.

“Am I pushing my luck?” I asked Adrian.

Moments later Martin sauntered back into the kitchen and said, “Actually,”—that’s a favored word right now, the snarky actually—“I’ve decided to wear my sandals today.”

On his feet were Velcro beach sandals, without socks.

It was 34 degrees out.

“Sure, Martin,” I said, content. “Why don’t you wear those sandals until it’s time for church, and then you can put socks and shoes on at the same time.”

I was happy. Adrian was happy. Martin was happy.

Autism, of course, has its ways of changing any day. At church, after the service but still in the sanctuary, I told Martin that he had enough time to run around in the gymnasium but would have to eat his snack in the car. (We had to get to an Anat Baniel Method therapy appointment.) Martin responded by screaming, repeatedly, interrupting the postlude and eliciting annoyance from fellow parishioners. I picked him up and carried him outside. A complete meltdown ensued.

Last night Adrian tucked Martin into bed at 8:00 pm. Martin, who has recently discovered the joy of exiting his bed and running to the living room, went to sleep at 10:45 pm. Unlike Adrian, I cannot fall asleep while Martin is up and chatting. I got to bed after 11:00 pm and was one unhappy camper when 5:00 am rolled around.

Fortunately, as I may have mentioned, yesterday Martin dressed himself without prompts.

Which reinforces this truth: With every new morning comes fresh hope.

Martin plays this weekend in Bedford-Stuyvesent, Brooklyn. I told him he was too big for these baby swings. He responded by putting his "little brother Curious George" in for a ride.

Martin plays this weekend in Bedford-Stuyvesant, Brooklyn. I told him he was too big for these baby swings. He responded by putting his “little brother Curious George” in for a ride.

Autism-Blind

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Martin was ignored yesterday.

The church that we attend now—much more traditional than the young, edgy congregation we left behind in Manhattan—includes a “children’s time” in the service. Children younger than age 10 are invited to gather near the chancel, where the pastor engages them with a few questions and tells a Bible-related story. Martin goes, too. The pastor, to his credit, usually calls Martin by name and addresses him once or twice, even if no response it forthcoming. I can’t say that Martin participates fully in the experience. I can say that he likes being included; he runs forward without hesitation.

Yesterday, the regular pastor was away, so children’s time was headed by a choir member who is also an elementary-school principal. Eight children participated. The principal began by greeting several (not all) of the children other than Martin by name. Then, without making eye contact with Martin or calling his attention in any way, she launched into her lesson. Martin, who is unfocussed and irritable this week (see the reference to nystatin in Saturday’s post), responded by fidgeting, lying on the floor, and turning away from the chancel to face the congregation, wearing a goofy smile. Finally, he stood up and drifted toward the organ, which fascinates him.

The principal probably could have halted 90% of Martin’s behavior by catching his attention and saying, “Martin, let’s sit and listen now,” or even just asking him a question about the Bible lesson.

Instead, she ignored him. Talked to the other children. Pretended like nothing was happening.

From being in the church choir, which sits only a few feet away from the chancel where the children gather, the principal must know that Martin sometimes needs extra help. I suppose that, once she was in charge of the group, she might have thought that I wouldn’t want Martin “called out.” In truth, I’d much rather have him called out briefly by an adult than allowed to call himself out with five minutes of inappropriate behavior. Or maybe she just didn’t know what to do, which would be disappointing in an elementary-school principal. In any event, children’s time was unproductive for Martin and uncomfortable for me.

Which brings me to one of those moments when I realize that Martin’s autism has taught me something without my noticing it.

A dozen years ago, a friend of mine mentioned (I have no recollection of how the subject matter arose) Dwayne “The Rock” Johnson being half-black.

“He is?” I asked. “What’s the other half?”

“Asian Pacific Islander. Why? What did you think he is?”

“I don’t know. A white guy, I guess,” I answered, honestly. “Maybe I never really thought about it.”

My friend, who is African-American, laughed. “I guess it’s good if you’re color-blind,” she said. “But I’m not sure thinking that everyone is ‘a white guy’ is the way to go.”

This morning at church brought that moment to mind. It is tempting to believe that the great equalizer is pretending that we are all the same. We are not the same. A person who is black, who practices Orthodox Judaism, who is male, who has a wife instead of a husband, who is single, who uses a wheelchair, whose English language skills are limited, who lacks formal education, or who [insert any of six billion variations here] does not have the same needs I have. It is not good to be color-blind, or physical-challenge-blind, or hyperactivity-blind, or autism-blind.

When your child has autism, you don’t get to ignore difference. Difference follows you around, speaking too loud and out of turn. It demands your attention. I am far more likely, today, to consider whether any trait, from intelligence to handicap to race, is influencing how an individual perceives his environment. I am far more likely, today, to ask myself what I can do to help.

I no longer act like the best course is pretending we’re all the same.

Lest it seem like church yesterday was a wholly disappointing experience, I am happy to report that other parents in the congregation get it. I was worried about Martin’s antics. As I glanced around I saw no disapprobation, only encouraging expressions ranging from, “Calm down. Martin’s with the other kids and he’s happy,” to, “He might be over there checking out the organ, but, hey, at least he isn’t playing it.”

The principal’s mistake notwithstanding, I think lots of us are marching toward embracing myriad needs.